Handbook of Assessment in Clinical Gerontology 2nd edition
Peter A. Lichtenberg
AMSTERDAM BOSTON HEIDELBERG LONDON NEW YORK OXFORD PARIS SAN DIEGOSAN FRANCISCO SINGAPORE SYDNEY TOKYO
Academic Press is an imprint of Elsevier
Academic Press is an imprint of Elsevier 32 Jamestown Road, London NW1 7BY, UK 30 Corporate Drive, Suite 400, Burlington, MA 01803, USA 525 B Street, Suite 1800, San Diego, CA 92101-4495, USA First edition published by John Wiley & Sons, Inc. 1999 Second edition 2010 Copyright Ó 2010 Elsevier Inc. All rights reserved No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without the prior written permission of the publisher Permissions may be sought directly from Elsevier’s Science & Technology Rights Department in Oxford, UK: phone (+44) (0) 1865 843830; fax (+44) (0) 1865 853333; email:
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List of Contributors Michelle S. Ballan Assistant Professor, Columbia University School of Social Work, New York, NY Steve Balsis, PhD Assistant Professor, Department of Psychology, Texas A&M University, College Station, TX Frederic C. Blow, PhD Professor, University of Michigan Department of Psychiatry, and Director, Department of Veterans Affairs National Serious Mental Illness Treatment Research and Evaluation Center (SMITREC) Michelle Braun Assistant Director, Inpatient Mental Health, Boston VA Healthcare System, Instructor in Psychiatry, Harvard Medical School Kathryn E. Brogan, PhD, RD K-L Assistant Professor, Department of Nutrition and Food Science, and Department of Pediatrics, Wayne State University, Detroit, MI Donna K. Broshek, PhD Co-Director, Neurocognitive Assessment Lab, University of Virginia School of Medicine, Charlottesville, Virginia Louis D. Burgio, PhD Harold R. Johnson Professor of Social Work, Research Professor, Institute of Gerontology, University of Michigan, Ann Arbor, MI Rebecca P. Cameron, PhD Associate Professor, Psychology, California State University, Sacramento, CA Cameron J. Camp Hearthstone Alzheimer Care, Woburn, MA Cheryl N. Carmin, PhD Professor & Director, Department of Psychiatry, University of Illinois at Chicago, Chicago, IL Brian D. Carpenter, PhD Associate Professor, Department of Psychology, Washington University, St. Louis, MO Caroline M. Ciliberti, MS Department of Psychology, West Virginia University, Morgantown, WV 26506-6010 Colleen Clemency, PhD Edith Nourse Rogers Memorial Veterans Hospital, Bedford, MA Jiska Cohen-Mansfield, PhD George Washington University Medical Center, Washington, DC, USA, Tel Aviv University Herczeg, Institute on Aging and Sackler Faculty of Medicine, Tel-Aviv, Israel
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Colin A Depp Department of Psychiatry, University of California, San Diego, CA Lisa W. Drozdick, PhD Research Director II, Clinical Assessment, Pearson, 19500 Bulverde Road, San Antonio, TX 78259 Jamie K. Ducharme University of Virginia Health System, Department of Neurology, Charlottesville, VA Barry A. Edelstein Professor, Department of Psychology, West Virginia University, Morgantown, WV 26506-6040 Erin E. Emery, PhD Department of Behavioral Sciences, Rush University Medical Center, Chicago, IL Adam Gerstenecker University of Louisville Gali Goldwaser, PhD PTSD and Stress-related Disorders, Research Service (151), VA San Diego Healthcare System, San Diego, CA Marcia G. Hunt, PhD VA Connecticut Healthcare System, Department of Psychiatry, Yale University School of Medicine, New Haven, CT Alden L. Gross, MHS Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD Lee Hyer, EdH Mercer School of Medicine, Macon GA Renee Hyer Mercer School of Medicine, Macon GA Catherine Jen, PhD Professor and Chair, Department of Nutrition and Food Science, Wayne State University, Detroit, MI Katherine S. Judge Department of Psychology, Cleveland State University, Cleveland, OH Deborah A. King, Ph.D. University of Rochester Medical Center, Rochester, NY Jennifer D. Kowalkowski, MS Doctoral Candidate, Psychology Department, Eastern Michigan University, Ypsilanti, MI Kristen Lawton Barry, PhD Research Associate Professor, University of Michigan Department of Psychiatry, and Investigator, Department of Veterans Affairs National Serious Mental Illness Treatment Research and Evaluation Center (SMITREC) Michelle M. Lee Department of Behavioral Medicine, Midwestern University, Downers Grove, IL
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Larry Lemos, RN MSN MHA GCNS-BC (Chapter 13) Geriatric Clinical Nurse Specialist, Community Living Center, VA Long Beach Health, Care System; Assistant Professor, Columbia University School of Social Work, New York, NY Casey Loughran Department of Psychiatry, University of California, San Diego, CA Catherine L. Lysack, PhD, OT(C) Deputy Director, Institute of Gerontology, Professor, Occupational Therapy & Gerontology, Wayne State University, Detroit, MI Theodore K. Malmstrom, PhD Department of Neurology & Psychiatry, Saint Louis University School of Medicine Carol A. Manning University of Virginia Health System, Department of Neurology, Charlottesville, VA Bernice A. Marcopulos, PhD Associate Professor, Psychiatry and Neurobehavioral Sciences, University of Virginia, Charlottesville, VA and Director, Neuropsychology Lab, Western State Hospital, Staunton, VA Benjamin T. Mast Associate Professor, Department of Psychological & Brain Sciences, University of Louisville, KT Aletha R. Miller, PhD Geropsychology Postdoctoral Fellow, Deer Oaks Mental Health Associates-Behavioral Health Organization, Fort Worth, TX Victor Molinari, PhD, ABPP Department of Aging and Mental Health Disparities, College of Behavioral and Community Sciences, Louis de la Parte Florida Mental Health Institute, University of South Florida, Tampa, FL Linda R. Mona, PhD Clinical Psychologist, VA, Long Beach Healthcare System, Behavioral Health (06/116-B), Long Beach, CA Jennifer Moye Director, Geriatric Mental Health, VA Boston healthcare system, Associate Professor of Psychology, Department of Psychiatry, Harvard Medical School. Elizabeth A. Mulligan Department of Psychology, Washington University, St. Louis, MO Thomas F. Oltmanns, PhD Edgar James Swift Professor in Arts & Sciences, Professor of Psychology and Psychiatry, Director of Clinical Training, Department of Psychology, Washington University in St. Louis, St. Louis, MO Raymond L. Ownby, MD, PhD Professor & Chair, Department of Psychiatry, College of Osteopathic Medicine, Nova Southeastern University, Ft. Lauderdale, FL Jeanine M. Parisi, PhD Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD
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Joseph M. Pellerito, Jr., PhD, OTRL, CDI Department of Occupatioal Therapy, College of Health and Human Services, Western Michigan University, Kalamazoo, MI George W. Rebok, PhD Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD Elizabeth J. Santos, MD University of Rochester Medical Center, Rochester, NY Lori Schindel Martin, PhD, RN Associate Professor, Daphne Cockwell School of Nursing, Ryerson University, Toronto, Ontario Ciera Scott Mercer School of Medicine, Macon GA Michael J. Skrajner Hearthstone Alzheimer Care, Wiloughby, OH Adam P. Spira, PhD Department of Mental Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD Maggie L. Syme, PhD Geropsychology Postdoctoral Fellow, VA Boston Healthcare System, Psychology Service, Boston, MA Raymond C. Tait, PhD Department of Neurology & Psychiatry, Saint Louis University School of Medicine Tracy Trevorrow Chaminade University of Honolulu Chriscelyn M. Tussey, PsyD Postdoctoral Fellow in Clinical Neuropsychology, Neurocognitive Assessment Lab, University of Virginia School of Medicine, Charlottesville, Virginia and Western State Hospital, Staunton, VA Ipsit Vahia Department of Psychiatry, University of California, San Diego, CA Carey Wexler Sherman, PhD Research Investigator, Institute for Social Research, University of Michigan, Ann Arbor, MI Carol J. Whitlatch, PhD Assistant Director, Margaret Blenkner Research Institute, Benjamin Rose Institute, 11900 Fairhill Rd., Suite 300, Cleveland OH John L. Woodard Wayne State University Erin L. Woodhead, PhD Department of Behavioral Sciences, Rush University Medical Center, Chicago, IL Catherine Yeager, PhD Essex County Hospital Center, Institute of Mental Health Policy, Research, and Treatment, Cedar Grove, NJ
Introduction Peter A. Lichtenberg, PhD, ABPP
Since I edited the first Handbook of Assessment in Clinical Gerontology in 1999, the field has witnessed a continuing explosion of research on clinical issues and a greater availability of assessment instruments. This book is intended primarily for those who use behavioral health (i.e., non-surgical, non-medication) assessments and interventions. The importance of understanding how to assess phenomena like affect, cognition, sleep, nutrition, home safety, driving (and many others) in older age continues to be a key to clinicians having an accurate understanding of change in older individuals. The paradox in clinical gerontology is that with the increase in sophistication and expertise in understanding gerontology syndromes and phenomena, there is a continuing decline in the number of professionals intensively trained to work with older adults, as well as a dearth of training opportunities for those interested in working with older adults. Thus, older adults are being (and will further be) assessed and treated by those practitioners who might only have the barest of training or experience in clinical gerontology. This version of the Handbook is aimed at assisting expert gerontologists, as well as those who have little or no background in gerontology. Each of the book’s chapters has the following five common components: (1) assessment instruments thoroughly reviewed; (2) two to four actual instruments embedded into the chapter; (2) case examples to illustrate the strengths and challenges of actual assessments; (4) discussion of the use of reassessment; and (5) addressing multicultural diversity issues in assessment. This introductory chapter reviews and expands upon key basic concepts for clinical gerontologists presented with the first edition of the Handbook.
PRINCIPLE 1: AGE AND FUNCTIONING ARE NOT LINEARLY RELATED IN CLINICAL SETTINGS Clinical gerontologists and those who work with older adults must become familiar with core geriatric medicine concepts. The most common ones are disability, comorbidity, and frailty. Once used synonymously, disability, comorbidity, and frailty are now understood as distinct, although overlapping and related conditions, which have significant implications for gerontologists. Perhaps the most familiar concept is disability, defined as “difficulty or dependency in carrying out activities essential to independent living.” Impairments affecting lower extremity mobility, for example, may curtail a person’s independence in transportation and locomotion. In geriatric rehabilitation, disability increases directly with age (Lichtenberg, 1998). Independence with mobility dropped from 30% for rehabilitation patients in their 60s to 3% for those aged 80e95. Similarly, independence with toileting was 65% in the 60-year-old group, and dropped to 40% in those aged 80e95 (Lichtenberg, 1998). Frailty describes an aggregate risk of complications for an older patient. Its early definition centered on the presence of more than one system (e.g., heart, lung, kidney, brain) compromised by disease and disability. More recently, frailty has become more clearly defined in its symptoms and effects on
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rehabilitation outcomes. Fried, Ferrucci, Darer, Williamson, & Anderson (2004) summarized her group’s definition as a syndrome with the following elements: decreased appetite and weight loss; gait disturbance and falling; and declining cognition. Some cases also have significant respiratory distress. This constellation of symptoms has an unclear etiology, and, rather, represents multiple system failure. Frailty has been linked to significantly increased rates of nursing home placement and mortality (Ferrucci et al., 2004). In the rehabilitation setting, frailty was related to older age of the patient (Hanks & Lichtenberg, 1996). Discharge from rehabilitation to a dependent situation increased from 35% in those aged 60e79 to near 50% in those aged 80e95. More specifically, discharge to a nursing home increased from 5% of those aged 60e69 to 25% of those aged 80e95. Thus, disability and frailty in clinical settings appeared to have direct relationships to aging, whereas comorbidity and mortality do not. Comorbidity refers to the presence of two or more medically diagnosed diseases in a given individual. Community-dwelling older adults most commonly suffer from arthritis (48%), hypertension (36%) and heart disease (27%), and the prevalence of these conditions increases with age. This relation often does not hold in rehabilitation settings. That is to say that although there is a clear relation between disability and patient age, there is no clear relation between comorbidity and age. In our studies (Lichtenberg, 1998), those aged 60e69 had 1.4 comorbidities, those aged 70e79 had 1.6 comorbidities, and those aged 80e95 had 1.3 comorbidities. The lack of a relation between age and comorbidity was further supported in a three-year mortality study in which age was not related to mortality, but comorbidity was. In this study (Arfken, Lichtenberg, & Tancer 2000), 36% of the sample died within three years of discharge from rehabilitation, with equal proportions of deaths coming from the 60e69, 70e79, and 80e95 age groups. Crimmins, Kim and Seeman (2009) examined poverty and biological risk, and their findings provide some plausible explanations why age and mortality are not linearly related in clinical settings. Their data were collected from two National Health and Nutrition Examination Survey (NHANES) samples, which they then linked to the national death index. The NHANES data revealed that poor people in each decade of life (20s through 70s) had higher levels of biological risk than people who are not poor in the corresponding ages, thus supporting the notion of premature aging in those who endure poverty. The overlap between and distinctions among disability, frailty, and comorbidity in older individuals has specific implications for clinical gerontology. Disability is inversely related to strength, coordination, and muscle mass, all characteristics associated with younger versus older ages. Frailty is a specific and extreme expression of the multisystem failures that occur when diseases interact with age-related deficiencies. Thus, in medical rehabilitation, for example, no matter what the primary diagnosis, one finds that younger patients are stronger, suffer less disability, and return more easily to independent living compared with the oldest patients. Comorbidity issues stand in contrast, however, as younger individuals have amounts of comorbid disease equal to those of the oldest patients. In fact, the finding that mortality does not differ among age groups indicates that perhaps the younger and older sets of geriatric rehabilitation patients represent different populations. The younger group (ages 60e79) present with much more extreme disease and disability than their community-based peers, while the older group more closely resembles their community cohort. It may well be that significant numbers of the youngeold cohort never make it to the oldest old-age groups. This last conclusion is critical to minority elders, who have often grown up in and continue to live in poverty.
PRINCIPLE 2: THERE IS NOW A BLURRING OF NORMAL VS. CLINICAL AGING Whereas 20 years ago the areas of research in normal aging (e.g., cognitive aging, social gerontology) did not intersect with the world of clinical aging (e.g., dementia, depression), these boundaries have blurred
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over time. Longitudinal data sets which selected healthy older adults created to study “normal aging” are now, because their participants have moved to advanced age and are no longer all healthy, become prime data sets for the study of dementia or late-life depression. There is no longer a clear demarcation between normal aging and clinical aging because gerontologists have recognized that almost every geriatric syndrome (e.g., depression, disability, dementia) has a slow onset to it, and is viewed as a chronic condition. A strategy for effective assessment and treatment of chronic conditions is to identify changes early in the syndrome and intervene. Thus, pathological changes are hypothesized to begin in what would be classified as normal aging. Two examples of this are disability and dementia. Fried et al. (2004) state that “physical disability in late life is . an outcome of disease and physiologic alterations with aging, with the impact of these underlying causes modified by social, economic, and behavioral factors as well as access to medical care.” As such, there are many variables along the pathway toward disability at which intervention and prevention techniques can be aimed to help identify and delay disability onset. In studying pathways toward disability, Fried, Bandeen-Roche, Chaves, & Johnson, (2000) posited that changes in the ability to complete tasks of daily living are preceded by changes in physical functioning. The concept of pre-disability or subclinical disability status, a stage that lies before dependence on the disability spectrum, has been put forth. In this subclinical stage, an older adult is still able to complete a task, but experiences decreased ability and, as a result, has altered the way in which the task is performed. This approach, which is aimed at intervention for high risk groups, now puts a clinical label on a condition without any obvious functional decline. Some people with pre-clinical disability will improve and some will have their conditions worsen and experience disability. A similar extension of clinical characterization has occurred in issues related to dementia. Viewing Alzheimer’s disease as a chronic condition like cancer, diabetes, and hypertension makes early detection and treatment a critical objective. During the past decade there have been several attempts to create new early detection markers. Mild cognitive impairment represents one of the most impacting of these strategies. Mild cognitive impairment was first characterized nearly a decade ago (Petersen et al., 1999). The new category was applied to people who had significantly reduced memory abilities, while retaining strengths in other cognitive and functional areas. Early studies indicated that nearly 60e90% of people suffering from mild cognitive impairment progressed to Alzheimer’s disease within five years. Morris and colleagues (2001) concluded that mild cognitive impairment represented early Alzheimer’s disease. Morris’ study, in which longitudinal data and post mortem examinations were conducted, generated great enthusiasm. Despite these early high hopes, persons meeting mild cognitive impairment criteria have not uniformly progressed to having a dementia. Indeed, a significant number of older adults meeting the criteria for mild cognitive impairment actually demonstrated improved cognition over time (Brooks, Tuerson, & White, 2007). Mild cognitive impairment comes under more criticism than pre-disability because there are no current interventions known to postpone any dementia syndrome. Pre-disability and mild cognitive impairment provide clinical-like categories for those whose symptoms do not yet meet the criteria for a geriatric syndrome. Clinicians need to be extremely sensitive as to how they use labels like pre-disability and mild cognitive impairment.
PRINCIPLE 3: GERONTOLOGIST MUST WORK TO ACTIVELY REDUCE AGEISM Ageism, pervasive discrimination against older adults, is widespread in the United States (Palmore, 1990). Allport used his social categorization theory to describe the basic tenants of discrimination (Allport, 1954). The non-dominant group (older adults in this case) is viewed as homogeneous and portrayed as having a variety of negative characteristics. Older adults are viewed stereotypically as: (1) alike; (2) alone and lonely; (3) sick, frail, and dependent; (4) depressed; (5) rigid; and (6) unable to
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cope (Hinrichsen, 2006). This pervasive view portrays all older adults in a negative light, ignoring the incredible hetereogeneity of aging and the strengths and positive attributes of older adults. Clinical gerontologists, themselves, must be cognizant of their own ageist thoughts and beliefs, and try to minimize these. Ageism can often be found where age and disability or decline intersect. This can be reflected in interactions whereby gerontologists might direct their comments only to a family caregiver, for example, and ignore the person with dementia who is sitting in the same room. Acting as an expert witness in a conservatorship case, I reviewed the neuropsychological report of a 94-year-old gentleman. The man in question had no cognitive deficits, and performed in the superior range on all cognitive tests. Despite this, the original evaluator, a neuropsychologist with excellent credentials concluded that “all older adults should have a conservator” since on average older people are more susceptible to financial fraud. Ageism and overly paternalistic conclusions are, in my experience, often found in cases such as the above. In these cases, broad generalizations are applied to individual cases without a close examination of the unique circumstances of the case. General population findings of risk factors and predictive abilities are given too much weight when being applied to an individual. The fact that older adults are more susceptible to financial fraud does not support the notion of the loss of financial freedom for each older individual. Even with good normative (generalized information) data it is paramount for clinical gerontologists to focus on the unique individual being assessed. An individual’s assessment must focus on the unique strengths noted in the person, environment or support system, and not simply on whether the assessment supports a diagnosis of a geriatric syndrome. When can a person with dementia make a valid will? What decisions about care can a person with dementia make? These types of questions can only be adequately addressed when details of individual cases are examined objectively and systematically.
PRINCIPLE 4: ALL GERIATRIC CARE OCCURS WITHIN A TEAM CONTEXT AND INTEGRATED CARE IS THE PREFERABLE MODEL Because older adults are treated by multiple practitioners, whether clinicians realize it or not, a team exists. Often this team of professionals is not activated and contributes to the broken health care system we now have. I had the pleasure of serving on Dr Sharon Brehm’s American Psychological Association 2007e08 Presidential task force Integrated Care for an Aging Population. During our background research it became clear how the older adults’ experiences of fragmented care contribute to poor assessment and treatment. Older adults are often treated by multiple practitioners, and rarely is any of that care coordinated. This despite evidence which has found geriatric teams lead to better clinical outcomes and for healthier teams to have positive, supportive, and frequent communication among their members (Lemieux-Charles & McGuire, 2006; Sheehan, Robertson, & Ormond, 2007). Integrated care, a team approach that emphasizes a high level of communication and coordination, should be the standard for gerontological assessment and treatment. Most practitioners are not trained in team environments and the following are some core traits that clinicians working with older adults should understand to improve their functioning within teams: 1. Clinical gerontologists should become familiar with the roles of other team members, identifying areas of overlap and areas of non-overlap. 2. Models of health delivery may differ among team members. Some clinicians may be most comfortable adhering to a traditional medical model: acting in more of a paternalistic mode and not including the emotional experiences of the patient. Other clinicians are trained in a more
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collaborative approach in which the patient is seen as an equal partner, and the patient’s emotional experiences are viewed as highly germane to treatment. 3. Conflict among team members is common and can lead to either a strengthening or weakening of the team. Increased communication brings out differences between different professional beliefs, different personalities, etc. Finding ways to resolve these conflicts in a productive manner is key to effective care. 4. Clinical gerontologists are often aware of and can be useful in applying conflict resolution skills. Since many trained in gerontology have experience in working with teams, clinical gerontologists may be in a good position to assist the team with conflict resolution. 5. Health care teams are communicating in increasingly diverse ways, ranging from team rounds face to face and the use of telemedicine to electronic medical records. Team functioning need not be thought of only as permanent teams; sometimes the coordination of care enables smooth entrance and exits by some members delivering varied or time-limited clinical service.
PRINCIPLE 5: A MAJOR TASK IN ASSESSMENT CONTINUES TO BE THE IDENTIFICATION OF PATHOLOGICAL FROM NORMAL PROCESSES There are two fundamental needs clinical gerontologists have: (1) the need for ever-increasing specificity of syndromes and familiarity with these syndromes; and (2) the need for good normative data across multiple health domains and assessment tools. Both of these continue to evolve. In my clinical consultation I am often surprised, and indeed alarmed, at the misapplication of symptoms to a diagnosis: delirium confused as dementia; dementia unrecognized in the context of disability or lifelong psychiatric conditions; end of life conditions of frailty going unrecognized; and aging equating with incapacity. These common errors originate in the lack of familiarity with geriatric syndromes and also the lack of good normative data to understand the normal range of functioning. What is the normal range of scores for older adults in domains such as sleep, pain, anxiety, and gait speed, for instance? How much daily variability is there in scores on assessments of depression, cognition, and nutrition, for example? Normative data is so often influenced by age, education, and historical/cultural factors. In fact, one key to improving assessment of under-represented minority elders is the ongoing effort to improve the normative database. Cognitive and affective assessments have been the two areas to receive extensive attention to normative data. Cognitive test interpretations are dependent upon norms, which then can be matched to an individual’s age, education, and often quality of education. The Logical Memory subtest, from the Wechsler Memory Scales, has consistently been related to reading ability, whereas the Fuld Object Memory Exam has not. Thus, overreliance on norms for White elders on tests of logical memory overestimated memory decline in Black elders. Depression scales have been compared across diverse populations, with some studies finding differential item validity for different groups, and some not finding any differences. These studies have demonstrated that reading ability impacts instruments more than we expected. The Beck Depression Inventory, for example, was found to be less accurate for less educated older adults than the Geriatric Depression Scale (see Lichtenberg, 1998) because the Beck test contained questions that were more difficult to understand. How much of a sleep inventory, a treatment adherence questionnaire, or a nutrition questionnaire related to age and education? Improving our normative base across all instruments is important for adults in general, but is especially important for members of diverse populations. Without a good normative database, assessment tools will likely overestimate pathology in older adults from minority groups. This has clearly been the case for cognitive assessment (see Lucas et al., 2005). As our nation’s older population
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becomes more and more diverse the importance of having adequate norms becomes ever more important. We will need normative data on Spanish versions of assessment tools, as well as many other languages.
PRINCIPLE 6: CLINICAL GERONTOLOGISTS SHOULD USE MULTIPLE METHODS OF ASSESSMENT AND BRIEF ASSESSMENTS Assessments of domains of interest may be best accomplished by incorporating self-report of abilities, a performance-based test of abilities, a collateral report of abilities (where it makes sense), and an analysis of the consistency or discrepancy between the reports. Accurately estimating one’s own abilities or habits (meta-cognition) not only strengthens one’s assessment of cognitive abilities, but also allows for the examination of awareness of deficit issues. Self-report measures alone are often not enough for the assessment process. The evaluator looks for converging evidence across these multiple methods of assessment and attempts to integrate these into the assessment. Conceptual and practical issues continue to support the use of brief assessments. Depending on the setting and purpose of the assessment, a two-tiered approach may be most useful. The first tier would be at the screening level. Most of the assessment instruments embedded in this Handbook would qualify as screening tools. Screening instruments are designed for use with high risk populations to call attention to a high likelihood of a problem in a specific behavioral domain. The short version of the MAST-G, for instance, is designed to be sensitive to alcohol problems but only takes a few minutes to administer. The second tier of assessment, triggered by a positive finding on a screening, or other suggestive evidence, consists of a more thorough assessment in which performance and collateral report may also accompany a more robust set of assessment measures. For behavioral health treatments, i.e., alcohol, pain, nutrition, treatment adherence, the assessment process is often intertwined with a brief educational component, assessment of patient beliefs, and even a brief motivational interviewing intervention. One-third of this second edition of the Handbook covers topics not covered in the previous edition. Many of these assessment areas were relatively neglected a decade ago, but are receiving everincreasing attention. These include personality disorders, elder abuse and financial fraud, family functioning and its role in supporting the older adult, nutrition, treatment adherence for chronic disease, neighborhood and home safety, personal choice in those with dementia, and assessment of cognitive training. The chapters are divided into three sections: psychopathology; behavioral disorders; and cognition. Accurate assessment and the use of assessment data in treatment remain at the cornerstone of excellent clinical care for older adults. This Handbook was created to provide clinicians more access to a wide variety of assessment tools in order that older adults receive more accurate assessments which will then guide clinical care and treatment planning.
REFERENCES Allport, G. W. (1979). The nature of prejudice. Cambridge, MA: Perseus Books (Original work published in 1954). Arfken, C. L., Lichtenberg, P. A., & Tancer, M. (1999). Cognitive impairment and depression predict mortality in medically ill older adults. Journal of Gerontology: Medical Sciences, 54A, M152eM156. Brooks, B. L., Iverson, G. L., & White, T. (2007). Substantial risk of “Accidental MCI” in healthy older adults: Base rates of low memory scores in neuropsychological assessment. Journal of the International Neuropsychological Society, 13, 490e500.
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Crimmins, E. M., Kim, J. K., & Seeman, T. E. (2009). Poverty and biological risk: The earlier “aging” of the poor. Journal of Gerontology: Medical Sciences, 64A, 286e292. Ferrucci, L., Guralnik, J. M., Studenski, S., Fried, L. P., Cutler, G. B., & Walston, J. D. (2004). Designing randomized, controlled trials aimed at preventing or delaying functional decline and disability in frail, older persons: A consensus report. Journal of the American Geriatrics Society, 52, 625e634. Fried, L. P., Bandeen-Roche, K., Chaves, P. M., & Johnson, B. (2000). Preclinical mobility disability predicts incident mobility disability in older women. Journal of Gerontology, Medical Sciences, 55, M43e52. Fried, L., Ferrucci, L., Darer, J., Williamson, J. D., & Anderson, G. (2004). Untangling the concepts of disability, frailty, and comorbidity: Implications for improved targeting and care. Journal of Gerontology: Medical Sciences, 59, 255e263. Hanks, R. A., & Lichtenberg, P. A. (1996). Physical, psychological and social outcomes in geriatric rehabilitation patients. Archives of Physical Medicine and Rehabilitation, 77, 783e792. Hinrichsen, G. (2006). Why multicultural issues matter to practitioners working with older adults. Professional Psychology, Research and Practice, 37, 29e35. Lemieux-Charles, L., & McGuire, W. L. (2006). What do we know about health care team effectiveness: A review of the literature. Medical Care Research and Review, 63, 263e300. Lichtenberg, P. A. (1998). Mental Health Practice in Geriatric Health Care Settings, New York, NY: Haworth Press. Lucas, J. A., Ivnik, R. J., Smith, G. E., Ferman, T. J., Smith, G. E., Parfitt, F. C., et al. (2005). Mayo’s older African Americans normative studies: Normative data for commonly used clinical neuropsychology measures. The Clinical Neuropsychologist, 19, 162e183. Morris, J. M., Sorandt, M., Miller, J. P., McKeel, D. W., Price, J. L., Rubin, E. H., & Berg, L. (2001). Mild cognitive impairment represents early-stage Alzheimer’s disease. Archives of Neurology, 58, 397e405. Palmore, E. (1990). Ageism: Negative and Positive. New York, NY: Springer. Petersen, R. C., Smith, G. E., Waring, S. C., Ivnik, R. J., Tangalos, E. G., & Kokmen, E. (1999). Mild cognitive impairment: Clinical characterization and outcome. Archives of Neurology, 56(3), 303e308. Sheehan, D., Robertson, L., & Ormond, T. (2007). Comparison of language used and patterns of communication in interprofessional and multidisciplinary teams. Journal of Interprofessional Care, 21, 17e30.
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Assessment of Depression and Bereavement in Older Adults
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Barry A. Edelstein1, Lisa W. Drozdick2, Caroline M. Ciliberti1 1
Department of Psychology, West Virginia University Morgantown, WV, USA, 2 Clinical Assessment, Pearson, San Antonio, TX, USA
This chapter addresses the assessment of older adult depression and bereavement. The assessment of depression in older adults can be complicated due to age-related differences in the presentation of depression, comorbid medical and mental health problems, and age-related changes in cognitive functioning. Moreover, available assessment instruments may have less utility with older adults, either because they were developed with younger adults, or because they were developed to meet diagnostic criteria that may not be appropriate for older adults (see Jeste, Blazer, & First, 2005). Consequently, clinicians may be failing to identify depression adequately in older adults and to identify and treat older adults with subsyndromal or minor depression, which involves considerable disability but is not formally recognized as a clinical disorder. This chapter addresses both depression and bereavement because loss is often a significant contributor to and risk factor for depression, and adults face increasing losses as they move through older adulthood. Depression is a normal response to a significant loss. The depression can last for a considerable amount of time and be functionally debilitating. Bereavement is one of the more significant risk factors for the first onset of depression and recurrent depression in older adults (Bruce, 2002). In light of the clinical significance of bereavement, its increasing likelihood over the lifespan, and the paucity of assessment literature addressing the topic, we have included the assessment of bereavement in this discussion of late-life depression assessment.
EPIDEMIOLOGY OF LATE-LIFE DEPRESSION Symptoms of depression tend to be approximately as prevalent in late life as in mid-life (Blazer, 2003). The frequency of depressive symptoms among the oldest old appears higher than among younger adults, although factors other than age (e.g., greater proportion of women, increased cognitive impairment, lower socioeconomic status, greater physical disability) may account for the difference (Blazer, 2003). The prevalence of clinically significant symptoms of depression ranges from 8e16% among community-dwelling older adults (Blazer, 2003). The prevalence of major depression in communitydwelling older adults ranges from approximately 1e4% (Beekman, Copeland, & Prince, 1999). Prevalence estimates for minor depression among community-dwelling older adults range from approximately 4e13%, with the highest estimate found in the Netherlands (Beekman et al., 1995). With minor and major depression combined, Steffens, Fisher, Langa, Potter, and Plassman (2009) found an overall prevalence of 11.19%, with the prevalence being similar for community-dwelling older men and women. Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10001-6 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
Prevalence estimates of major depression vary across settings, with increases in prevalence as one moves from outpatient to inpatient settings. The prevalence of major depression among older adults seen in primary care settings ranges from 5e10% (Lyness et al., 2002; Schulberg et al., 1998). Among hospitalized older adults, prevalence rates of major depression range from 10e12% (Blazer, 1994; Koenig, Meador, Cohen, & Blazer, 1988). Prevalence estimates for major depression among long-term care residents are even higher, ranging from 12.4% to 14.4% (Parmalee, Katz, & Lawton, 1989; Teresi, Abrams, Holmes, Ramirez, & Eimicke, 2001). These epidemiological findings must be tempered by the questionable adequacy of our current diagnostic system for older adults (see discussion below) and the finding of different relations between age and depression across studies. Researchers have noted varied relations between age and depression, including negative linear, curvilinear, and positive linear relations (Nguyen & Zonderman, 2006). Nguyen and Zonderman suggest that the differences in relations can be attributed, in part, to the nature of the assessment measures employed. Measures of depressive symptoms reveal a negative linear relation or positive curvilinear relation. Such relations suggest fewer symptoms of depression as one ages, or increased symptoms among younger and older adults when compared with an intermediate age group. The authors note that when diagnostic measures of major depression are used, there tends to be a positive linear or negative curvilinear relation between age and depression. Thus, major depression increases with age, or is lower among younger and older groups when compared with an intermediate age group.
CONCEPTUAL APPROACHES TO ASSESSMENT The assessment paradigm employed by the clinician determines the assessment methods and instruments employed, the questions addressed, and the integration and use of the assessment results (Edelstein, Martin, & Koven, 2003; Edelstein & Koven, in press). Haynes and O’Brien (2000) have defined an assessment paradigm as “a set of principles, beliefs, values, hypotheses, and methods advocated in an assessment discipline or by its adherents” (p. 10). Two conceptually distinct paradigms are the traditional (e.g., trait-oriented, psychodynamic) and the behavioral (e.g., behavioreanalytic, cognitiveebehavioral). One can distinguish between traditional and behavioral paradigms through an examination of how each explains or accounts for behavior. More traditional approaches tend to emphasize an individual’s dispositional characteristics (see Mischel, 1968) or hypothetical constructs (e.g., anxiety, depression), which are inferred from the individual’s self-reports and observed behavior (Edelstein, Woodhead, Bower, & Lowery, 2006). Such approaches to psychopathology often include exploration of an individual’s feelings or affective states. Behavioral approaches tend to be more contextual and emphasize descriptions of environmental conditions under which the behavior of interest is more or less likely to occur. A behavioral account of an individual’s behavior involves a description of the conditions under which the behavior occurs (see Edelstein & Koven, in press). More emphasis is placed on the variables controlling the behavior of interest, and less emphasis is placed on characteristics of the individual. It is important to note that behavioral approaches do not discount the role of cognitions or private events; however, they do not consider cognitions to have causal efficacy. Cognitions are treated as any other behavior, whether observable or not. For the purposes of the present discussion, emphasis is placed on behavioral assessment that relies primarily on direct observation of overt behaviors. One might also distinguish between traditional and behavioral approaches by considering the distinction between nomothetic and idiographic approaches to personality assessment (see Allport, 1936). Traditional approaches are more closely aligned with a nomothetic approach, which involves an examination of the commonalities among individuals. This approach underlies classification systems
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5
such as the Diagnostic and Statistical ManualeFourth Edition (DSM-IV) (American Psychiatric Association, 1994). In contrast, behavioral approaches are more similar to the idiographic approach, which is used to ascertain the uniqueness of an individual. Traditional and behavioral approaches and instruments are often combined. For example, one might administer a self-report depression inventory and examine the individual item responses to gain an individualized understanding of the individual’s mood. The total score on the instrument may also be compared with that of a normative sample to enable one to make a judgment about whether the individual’s score is below or above a cutoff score that signals a clinical level of depression. Each approach has its strengths and weaknesses. As one moves from cognitively intact to cognitively impaired older adults, one must rely more on the direct observation of behavior, because the self-reported experiences of depression become unreliable and/or invalid, and eventually unavailable as cognitive skills diminish. Nomothetic assessment instruments must now depend upon the inferences of clinicians based on direct observations of the older adult. Mood and other symptoms must now be inferred from overt behavior. The question of why an individual is reporting particular experiences and engaging in particular behaviors can no longer be answered by questioning that individual. The nomothetic and idiographic assessment methods tend to converge on the observation of behavior.
DEFINITION AND DIAGNOSTIC ISSUES Jeste et al. (2005) cogently argued that age-appropriate diagnostic criteria are needed for the major DSM psychiatric diagnoses. This issue is particularly salient for the diagnosis of late-life depression, as older adults often present a different array or profile of symptoms than younger adults (Caine, Lyness, King, & Connors, 1994; Fiske & O’Riley, 2008). For example, older adults are less likely than younger adults to report suicidal ideation (Blazer, Bachar, & Hughes, 1987), guilt (Gallo, Rabins, & Anthony, 1999; Musetti et al., 1989; Wallace & Pfohl, 1995), and dysphoria (Gallo, Anthony, & Muthen, 1994; Gallo et al., 1999). In contrast, older adults are more likely than younger adults to report hopelessness and helplessness (Christensen et al., 1999), somatic symptoms (Gallo et al., 1994), psychomotor retardation (Gallo et al., 1994), weight loss (Blazer et al., 1987), and loss of appetite (Blazer et al., 1987). The issue of whether somatic symptoms should be considered among the diagnostic criteria for depression among older adults has been somewhat controversial (see Norris, Snow-Turek, & Blankenship, 1995), in part because of the overlap of symptoms of physical disease and somatic symptoms of depression (e.g., low energy, sleep disturbance, diminished appetite and sexual drive). The frequency and severity of medical conditions increase with age and can lead to many of the somatic symptoms included in the diagnosis of depression (e.g., weight loss or gain, insomnia, fatigue). Moreover, depression is frequently comorbid with physical illness and cognitive dysfunction, both of which increase with age. Several studies reported increased endorsement of somatic symptoms of depression with increasing age and suggest removing somatic symptoms from self-report measures of depression (e.g., Barefoot, Mortensen, Helms, Avlund, & Schroll, 2001; Berry, Storandt, & Coyne, 1984; Bolla-Wilson & Bleecker, 1989; Goldberg, Breckenridge, & Sheikh, 2003; Mahurin & Gatz, 1983). However, many studies suggest that removing somatic items from assessment instruments may result in decreased sensitivity to depression in older adults (Drayer et al., 2005; Kirmayer, 2001; Norris, Arnau, Bramson, & Meagher, 2004). Moreover, somatic symptoms cannot always be attributed to physical disease (Gatz & Hurwicz, 1990; Olin, Schneider, Eaton, Zemansky, & Pollock, 1992; Wagle, Ho, Wagle, & Berrios, 2000). There is evidence to suggest that while changes in appetite and sexual drive
6
CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
may not be indicative of depression among older adults, the remaining somatic symptoms are indicative (Nguyen & Zonderman, 2006; Norris et al., 2004). Clinicians should consider assessing somatic symptoms of depression, although caution should be used when interpreting results obtained in individuals for whom medical issues may be contributing to results. Several other factors can complicate the assessment of late-life depression, including the onset of symptoms. The time of onset of the first depressive episode of major depression may be related to the nature of depression symptoms (Jeste et al., 2005). The symptoms of first-onset, late-life depression (after age 60) may be different from depression that occurs early in life (before age 60) and recurs in late life (Brodaty et al., 2001). Older adults can experience symptoms of depression that do not meet criteria for a depression diagnosis, yet are associated with psychosocial and functional impairment similar to that associated with major depression (Beekman et al., 1995; Hybels, Blazer, & Pieper, 2001; Lavretsky, Kurbanyan, & Kumar, 2004). Various authors have argued that depression should be conceptualized along a continuum of severity (e.g., Rapaport et al., 2002), with major depressive disorder at one end, subsyndromal depression at the other end, and minor depression in the middle (e.g., Hybels et al., 2001; Lavretksy et al., 2004). Although subsyndromal depression is not currently classified, minor depression appears in the appendix of DSM-IV. Subthreshold depressions are of particular importance for older adults, as their prevalence increases with age (Judd, Schettler, & Akiskal, 2002). Moreover, in an examination of older primary care patients, Lyness, King, Cox, Yoediono, and Caine (1999) found that the prevalence of subsyndromal depression exceeded that of major depression, minor depression, and dysthymia. There are two additional presentations of depression that do not meet criteria for major depression, dysthymia, or minor depression, and are thought to be more common in older adults. The first is termed “depression without sadness,” (Gallo, Rabins, Lyketsos, Tien, & Anthony, 1997) in which individuals present with symptoms of depression (e.g., hopelessness, worthlessness, thoughts of death or suicide) but do not report sadness or loss of interest or pleasure in formerly enjoyed activities. Even though these individuals fail to meet DSM-IV criteria for depression, they are at risk for functional disability, psychological distress, cognitive impairment, and death (Gallo & Rabins, 1999). Similarly, Newmann, Engel, and Jensen (1991) characterized a “depletion syndrome” with symptoms of loss of appetite, lack of interest, thoughts of dying, and hopelessness (see also Adams, 2001). Olin, Katz, Meyers, Schneider, and Lebowitz (2002) have argued that the depression that occurs with Alzheimer’s disease is different from other depressive disorders and have proposed provisional criteria for “depression of Alzheimer’s disease.” They suggest that the depression observed with Alzheimer’s patients is different from “depression due to a general medical condition.” The outcome of the authors’ proposal remains to be seen. Mayer et al. (2006) compared three rating scales for use as outcome measures in treatment trials of “depression of Alzheimer’s disease.” The Cornell Scale for Depression in Dementia (CSDD) (Alexopoulos, Abrams, Young, & Shamoian, 1988), particularly the mood subscale, appeared to be the best choice for measuring the effects of treatment. The CSDD is discussed later in this chapter.
Multicultural Issues The racial and ethnic diversity of older adults in the United States is expected to increase with the growing population (U.S. Census Bureau, 2008a), with minority populations expected to become the majority in 2042. This is particularly important to appreciate, as prevalence estimates of depression vary across racial and ethnic groups. Some authors (e.g., Mui, Burnette, & Chen, 2002) have argued that the prevalence data for some racial and ethnic groups are biased due to the low acceptability of measures used to report symptoms in minority populations, and various socioecultural factors (e.g.,
Definition and Diagnostic Issues
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tolerance of symptoms). Moreover, norms are often not available for racial and ethnic groups, and psychometric properties are often not available for racial and ethnic groups on assessment instruments that were developed with Caucasian samples. Moreover, there appear to be cross-cultural differences in the expression of depression symptoms (Futterman, Thompson, Gallagher-Thompson, & Ferris, 1997). For example, Japanese individuals tend to report interpersonal complaints, whereas Chinese individuals tend to present somatic symptoms (Krause & Liang, 1992). However, whether these cultural differences are exhibited through old age is unclear at this time. Readers are cautioned to carefully consider the available normative data for racially or ethnically diverse clients, to avoid stereotypes when considering culturally specific information in the assessment process. Interested readers are referred to Sue and Sue (2007), who provide helpful information on working with racially and ethnically diverse populations. Many of their suggestions are particularly useful for understanding perspectives on mental health care by first generation immigrants, and those who maintain a strong cultural identity. Symptoms of depression vary between community-dwelling African American and non-African American individuals, including endorsement rates for “less hope about the future, poor appetite, difficulty concentrating, requiring more effort for usual activities, less talking, feeling people were unfriendly, feeling disliked by others, and being more ‘bothered’ than usual” (Blazer, Landerman, Hays, Simonsick, & Saunders, 1998). However, these authors found when such factors as education, income, cognitive impairment, chronic health problems, and disability were controlled, the differences across race/ethnic groups in somatic complaints and satisfaction were minimal. Rates of depression among older adult African American individuals tend to be lower than the rates for Caucasian older adults (Blazer, 2003). Results of the recent Aging, Demographics, and Memory Study (Steffens et al., 2009) revealed a prevalence of depression (minor and major combined) among African Americans that was one-third of the prevalence for Whites and Hispanics. With the exception of a greater number of somatic complaints by African American women, there appear to be no significant differences in the symptoms of depression as expressed by African American and Caucasian older adults (Myers et al., 2002). The population of Hispanic individuals in the United States is large and diverse, suggesting that any attempt to generalize across Hispanic subgroups would be unwise. The largest Hispanic groups of older adults (65þ), according to the U.S. Census Bureau (2006), are Mexican Americans (64%), Central and South Americans (13.1%), Puerto Rican Americans (9.0%), Cuban Americans (3.4%), Dominican Americans (2.8%), and other Hispanics (7.7%). The prevalence of depression among Hispanic Americans is relatively high. A study of depression among older Mexican Americans in the Sacramento area (Gonzalez, Haan, & Hinton, 2001) revealed a prevalence of 24.5% using a CESeD cutoff of 16 or more. The prevalence was higher among immigrants (30.4%) and less acculturated participants (36.1%). In comparison, the prevalence rate for U.S. born participants was 20.5%. In a recent examination of the Health and Retirement Study, Yang, Cazorla-Lancaster, and Jones (2008) found that Puerto Rican American older adults have a higher prevalence rate for major depression (19.3%) than other Hispanic individuals living in the United States; Cuban Americans had the next highest rate (11.7%), followed by Mexican Americans (8.2%). The population of Asian individuals in the United States is also quite diverse, with level of acculturation playing a role in the prevalence of depression. In a study of acculturation stress and depression among Asian (i.e., Chinese, Korean, Indian, Filipino, Vietnamese, and Japanese) immigrant older adults, Mui and Kang (2006) found that higher acculturation stress was associated with higher depression levels. Similarly, a review by Kuo, Chong, and Joseph (2008) found that depression is prevalent among older adult Asian immigrants, and is linked to a variety of variables (e.g., gender, how long they have been an immigrant, English proficiency, acculturation, health status, social support).
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
A recent study of 2611 community-dwelling Chinese adults (Niti, Ng, Kua, Ho, & Tan, 2007) in Singapore, aged 55 and older, revealed a 13.3% prevalence of depressive symptoms based upon scores on a Chinese version of the Geriatric Depression Scale (Yesavage, Brink, & Rose, 1983). This rate is similar to the 12.5% rate reported in Hong Kong (Chi et al., 2005) and the 20.1% rate reported in Taiwan (Chiu, Chen, Huang, & Mau, 2005) using the Geriatric Depression Scale. Asian individuals are likely to hold a holistic view of the mind and body (Sue & Sue, 2007). A physical complaint is a culturally acceptable means of expressing an emotional disorder (Sue & Sue, 2007). This is consistent with the finding that somatic complaints are common among depressed Asian individuals (Parker, Cheah, & Roy, 2001). Depression is a major concern among American Indian older adults (Greer, 2004). However, until recently, information regarding the prevalence of depression among American Indians remained insufficient because few studies had sufficient sample sizes, and some were conducted with nonrandom samples (Beals et al., 2005). Unfortunately, the most recent and carefully conducted epidemiological study of American Indians, the American Indian Service Utilization, Psychiatric Epidemiology, Risk and Protective Factors Project (AI-SUPERPFP; Beals et al., 2005) failed to include individuals over the age of 54. Thus, adequate prevalence estimates for older adult American Indians remain unknown. One must remember that there are considerable within-group and between-group cultural differences among racial and ethnic groups, and that degree of assimilation, educational experience, and acculturation can yield very different individual clinical presentations. One must be careful not to overgeneralize with regard to behavioral characteristics, cultural values, and the presentations of symptoms when working with an individual client.
Multi-method Assessment No single method of assessment is consistently superior to any other. Each method (e.g., interviews, direct observation, self-reports, reports by others, psychophysiological recordings) has its strengths and shortcomings. Because of that, using multiple methods and sources of information has been strongly recommended in the assessment literature (e.g., Eid & Diener, 2006; Haynes & O’Brien, 2000) to ensure accurate, reliable, and valid information. This is particularly true when assessing individuals with cognitive impairment. One can avoid, to some degree, the shortcomings of any one method, and capture information unique to any one method, by employing multiple methods. For the sake of simplicity, we have focused on three general methods. The interested reader is referred to Eid and Diener (2006) for a more comprehensive treatment of multiple method measurement.
Self-Report Self-report is arguably the most popular assessment method. The most commonly used assessment instrument, the clinical interview, employs self-report. It is also the method used for the multitude of questionnaires and inventories designed to examine various forms of psychopathology and cognitive functioning. Clinicians should be sensitive to the specific wording of the questions, question format, and question context, as these can influence self-reports of older adults (Schwarz, 1999; 2003). Older adults are more likely than younger adults to be cautious when responding, give more acquiescent responses, refuse to answer certain types of questions, and respond “don’t know” (Edelstein, Woodhead, Bower & Lowery, 2006). Older adults may also minimize or deny symptoms (Blazer, 2009; Wong & Baden, 2001). The accuracy, reliability, and validity of older adult self-reports is mixed, suggesting that one should be cautious when using the self-report method and, when possible, utilize multiple methods. There are limited findings which shed light on the adequacy of self-reported information that relates specifically to depression assessment. Older adult self-reports of insomnia, when compared with the results of polysomnography, have been good (e.g., Reite, Buysse, Reynolds, & Mendelson,
Definition and Diagnostic Issues
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1995). In addition, self-reports of activities of daily living by older adults in outpatient settings are strongly related to performance measures (Sager et al., 1992); although the accuracy of estimates of functional ability are mixed (e.g., Rubenstein, Schairer, Wieland, & Kane, 1984; Sager et al., 1992). Among the factors that contribute to the adequacy of older adult self-reports are physical health and acute or chronic cognitive impairment. As one might expect, cognitively impaired older adults often have impaired memory, and are less likely to comprehend questions or the nature of information requested. Moreover, older adults in the earlier stages of dementia often deny memory impairment, and may also deny other symptoms (e.g., Larrabee & Crook, 1989). In contrast, older adults with mild to moderate dementia may offer reliable and valid self-reports when only recent memory is required (see Feher, Larrabee, & Crook, 1992). Finally, when using self-report measures, it is important to determine the quality of their psychometric support. There are an increasing number of self-report instruments being developed with, and for use with, older adults (e.g., assertiveness, Northrop & Edelstein, 1998; worry, Wisocki, Handen, & Morse,1986; fear, Kogan & Edelstein, 2004; depression, Yesavage et al., 1983; anxiety, Pachana et al., 2007; suicide risk, Edelstein et al., in press). However, clinicians too often adopt selfreport measures that were developed with younger adults, and utilize them with older adults without considering their psychometric properties and whether suitable normative data are available.
Report-By-Others The report-by-other (e.g., spouse, caregiver, adult child) assessment method has many of the strengths and weaknesses of the self-report method. The principal shortcoming is that those reporting on an individual rarely have continuous access to the individual’s behavior, both covert and overt. An advantage of including reports-by-other is that they often provide unique and converging information. Information obtained from multiple sources can provide a rich array of information across contexts and time. Reports-by-others become invaluable when assessing cognitively impaired individuals. As one gathers information from various individuals, it is important to remember that these reports are subject to the same potential problems of unreliability, invalidity, and inaccuracy as self-report and other assessment methods. The characteristics of the individual providing the report can influence the accuracy of the information obtained. For example, when Zanetti, Geroldi, Frisoni, Bianchetti, and Trabucchi (1999) compared caregiver reports of patients’ ADLs against direct measurement of the patients’ ADLs, they found that the accuracy of the caregiver reports varied as a function of the caregiver’s depressive symptoms and burden level.
Direct Observation Direct observation is an important source of information, regardless of the patient’s level of physical, medical, and psychosocial functioning. One can begin to formulate hypotheses about an individual’s functioning by merely watching that individual walk down a hallway, rise from a bed, or formulate a greeting as he or she is met for the first time. The psychomotor speed, characteristics of speech, frequency and duration of eye contact, quality of grooming, and many other characteristics can provide clues as to psychological functioning before the first words are spoken. Does the individual leave his or her bedroom or house? Does he or she continue to engage in once pleasurable activities? Does the individual remain in bed for long periods of time? The number of potentially relevant, observable behaviors is considerable. Direct observation is a source of convergent information that can be incorporated into a multi-method assessment. Direct observation can be particularly useful when assessing cognitively impaired older adults, and those who are uncooperative with interviews. As with the other assessment methods, direct observation of behavior must be reliable, valid, and accurate. Discrepancies among reports of direct observations
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
should be explored, and training to avoid such discrepancies should be provided if the setting permits (e.g., inpatient medical facilities, long-term care facilities). Techniques for systematically sampling and recording behaviors can easily be taught to hospital or nursing home staff, as well as family members. Observational methods can be tailored to the behavior of the individual and the demands of the caregivers and staff members. Ideally, a list of specific behaviors and symptoms can be provided, rather than asking staff or family members to “watch out for symptoms of depression.”
Multidimensional Assessment Late-life depression is a multidimensional problem for older adults, whose health and cognitive, social, adaptive and psychological functioning collectively yield a complex assessment challenge that often requires the expertise of multiple disciplines (see Zeiss & Steffen, 1996). Such an approach to assessment is often termed “comprehensive geriatric assessment” (Rubenstein, 1995). Support for the assessment of these domains is found in the DSM-IV and in the nursing home assessment recommendation of the Omnibus Budget Reconciliation Act (1987). Multidimensional assessment can lead to improved diagnostic accuracy, more appropriate placement, improved functional status, more appropriate use of medications, improved coordination of services, and improved emotional status (Edelstein et al., 2003). A recent review of the comprehensive geriatric assessment literature (Ellis & Langhorne, 2005) also revealed that such assessments increase the chances of patients remaining at home and avoiding hospitalization. We have confined our brief discussion of multidimensional assessment to a discussion of functioning in the following domains: adaptive functioning, health, cognitive functioning, and social support. The focus of this chapter is depression, which would fall under the domain of psychological functioning. A broader discussion is beyond the scope of this chapter.
Assessment of Adaptive Functioning Adaptive functioning is usually defined by an individual’s ability to perform activities of daily living (ADLs) (e.g., eating, dressing, bathing) and instrumental activities of daily living (IADLs) (e.g., meal preparation, money management). Numerous medical and psychological disorders, and physical disabilities, can diminish one’s adaptive functioning (e.g., depression, dementia, diabetes, Parkinson’s disease, chronic obstructive pulmonary disease). Depression can be particularly devastating on the ability to perform activities of daily living (e.g., Penninx, Leveille, Ferrucci, Van Eijk, & Guralnik, 1999). In addition, individuals whose daily activities are already compromised by disease or disability prior to experiencing depression are at increased risk of experiencing diminished adaptive behaviors with the presence of depression. This is particularly a problem for older adults as they transition from community residences or residential facilities to long-term care facilities (Achterberg, Pot, Kerkstra, & Ribbe, 2006). The relation between depression and adaptive functioning can be reciprocal, as diminished adaptive behaviors can lead to depression (Blazer, Steffens, & Koenig, 2009). Several ADL and IADL assessment instruments are available, including the Katz Activities of Daily Living Scale (Katz, Downs, Cash, & Grotz, 1970), the Adult Functional Adaptive Behavior Scale (Spirrison & Pierce, 1992), the Texas Functional Living Scale (Cullum, Weiner, & Saine, 2009), and the Independent Living Scales (Loeb, 1996).
Assessment of Physical Health Approximately 80% of older adults experience at least one chronic health problem, with 50% having two or more chronic conditions (He, Sengupta, Velkoff, & DeBarros, 2005). Moreover, approximately
Definition and Diagnostic Issues
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20% of older adults suffer from at least one disability (He et al., 2005). The prevalence of major depression in primary care patients is 5e10%, and 11% for medical inpatients (Alexopoulos et al., 2002). The assessment of depression is complicated by the comorbidity of health problems: physical diseases can both accompany and present as depression. For example, hypothyroidism can initially present as depression (Fountoulakis, Iacovides, Grammaticos, St. Kaprinis, & Bech, 2004). Moreover, hypothyroidism and cerebrovascular disease can precede the diagnosis of late-life depression (Alexopoulos, 2005; Alexopoulos et al., 2002; Fountoulakis et al., 2004). Depression also can follow or result from other medical conditions, e.g., Alzheimer’s disease, stroke, Parkinson’s disease, myocardial infarctions, chronic obstructive pulmonary disease (Cummings & Victoroff, 1990; Rodin, Craven, & Littlefield, 1991; van Manen et al., 2002). One of the more challenging tasks in the assessment of late-life depression is deciphering the contributions of physical disease to the presentation of depression. To further complicate the assessment, one must consider the potential contributions of medications taken by older adults. Older adults consume 34% of all prescription medications, and 30% of all overthe-counter medications, although they constitute only 12% of the U.S. population (Centers for Disease Control and Prevention, 2004; Hajjar, Cafiero, & Hanlon, 2007). Older adults take an average of two to five medications, and 20e40% of older adults take five or more medications (McLean & Le Couteur, 2004). As one ages, one’s body undergoes anatomical and physiological changes that affect drug pharmacokinetics (e.g., absorption, distribution, metabolism, excretion) and pharmacodynamics (e.g., effect of drug on its target site; Mangoni & Jackson, 2004). These changes often increase the sensitivity of the older adult to medications and the potential for adverse effects. In light of the number of medications taken by older adults, the task of sorting out potential drug interactions and adverse medication effects can be challenging. Perhaps more directly relevant to the assessment of depression are drugs that can produce depressive symptoms as side effects (see Patten & Love, 1994); for example, corticosterioids, sedatives, and drugs used to treat hypertension, elevated cholesterol, and asthma.
Assessment of Cognitive Functioning The difficulty of distinguishing dementia from depression has long been recognized, and represents yet another assessment challenge (see Storandt & VandenBos, 1994). The difficulty stems from the overlapping symptoms of depression and dementia, and the fact that the two can coexist. An individual with depression can exhibit deficits in attention and concentration, which interfere with the learning of new information. Difficulty in retrieving information may also be impaired. Depressed individuals may also appear apathetic and withdrawn. The interested reader is referred to Kaszniak and Christensen (1994) for a discussion regarding the differentiation of dementia and depression. Moreover, there is increasing evidence of deficits in executive function in late-life depression (Alexopoulos, 2003; Elderkin-Thompson, Mintz, Haroon, Lavretsky, & Kumar, 2007). Some of these symptoms may improve once depressive symptoms abate (Butters et al., 2000). However, even if symptoms of cognitive impairment improve or remit, those who experience symptoms of cognitive impairment during a depressive episode are more likely to develop dementia in the future (Alexopoulos, Meyers, Young, & Mattis (1993). The initial evaluation of an older adult whom one suspects is depressed or cognitively impaired should at least include screening for cognitive impairment. Several cognitive screening instruments are available, each with its strengths and weaknesses (see Cullen, O’Neill, Evans, Coen, & Lawlor, 2007, and Edelstein et al., 2008). Though the Mini-Mental State Examination (MMSE; Folstein, Folstein, & McHugh, 1975) is probably the most popular of the available screening instruments, there are several
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
alternatives, some of which may be more sensitive to mild cognitive impairment than the MMSE; for example, the St. Louis University Mental Status Examination (SLUMS; Tariq, Tumosa, Chibnall, Perry, & Morley, 2006), and the Montreal Cognitive Assessment (MoCA; Nasreddine et al., 2005), which is available in more than 10 languages. If impairment is suggested by performance on a cognitive screening instrument, additional cognitive or neuropsychological assessment can be performed. The interested reader is referred to Woodford and George (2007) for a review of cognitive assessment methods.
Assessment of Social Support A relation between social support and depression is well established in the literature (Barnett & Gotlib, 1988), although the direction of that relation has been questioned (Krause, Liang, & Yatomi, 1989). Although social support has the potential for buffering stress, consideration of both positive and negative social support is important. One should not presume that because someone has a relationship with another individual, that the sum of their social interactions is positive for that individual. Negative social support (see Rook, 1994) is positively related to depression among older adults (e.g., Pagel, Erdly, & Becker, 1987). When exploring social support, the number of individuals providing social support should be considered separately from the individual’s satisfaction with support.
DEPRESSION ASSESSMENT INSTRUMENTS Many depression assessment instruments have been validated for use with older adults. When selecting instruments, appropriate normative data and adequate indications of reliability and validity are required; however, reliability estimates and diagnostic statistics (e.g., sensitivity) are highly dependent on sample characteristics. Larger samples, lengthier assessment instruments, greater score variability, and larger score ranges produce higher estimates of reliability. It is important to consider these factors when interpreting the results of studies and selecting a particular instrument to use with an individual. Here we review only the depression assessment instruments most commonly used with older adults. While other instruments show promise, such as the Quick Inventory of Depressive Symptomatology (QIDS; Rush et al., 2003), there is limited research on their use in older adults and they are not discussed further in this chapter. Each of the following instruments is considered in terms of its psychometric properties and overall strengths and weaknesses. For a review of the validity of using depression instruments in older adults for diagnostic purposes, monitoring change, or rating severity, see Fiske and O’Riley (2008).
Self-Report Instruments We have found self-report assessment instruments to be the most valuable objective assessment instruments, as they are often easy and quick to administer. However, it is important to note examinee characteristics (e.g., low educational attainment or compromised cognition may relate to difficulty comprehending and completing self-report measures) and the potential for response bias when interpreting results. For example, Burke, Houston, Boust, and Roccaforte (1989) found elevated rates of false-negative errors on the Geriatric Depression Scale (GDS) (Yesavage et al., 1983) in Alzheimer’s patients. It is important to note that many of the instruments were administered orally to examinees, particularly to individuals with suspected cognitive impairment, difficulty completing the forms, or residing in nursing homes. In most cases the psychometric data obtained was similar to that obtained with individuals who self-completed the forms.
Depression Assessment Instruments
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Beck Depression Inventory Several versions of the Beck Depression Inventory are available. The Beck Depression Inventory (BDI; Beck, Ward, Mendelson, Mock, & Erbaugh, 1961) is the most well-researched depression selfreport inventory with older adults. It is a 21-item, multiple-choice inventory employing Guttman scaling designed to assess the level of depression in adults. Each item is scored 0 to 3 points for a total score range of 0 to 63. The scale was developed as a quantitative measure of depression and was not originally intended as a diagnostic instrument (Kendall, Hollon, Beck, Hammen, & Ingram, 1987). Suggested score ranges for mild depression, moderate to severe depression, and severe depression are 10e19, 20e30, and 31 or higher, respectively (Kendall et al., 1987). A 13-item short form (Beck & Beck, 1972) is also available with score ranges of 5e7 for mild depression, 8e15 for moderate depression, and 16 or higher for severe depression. The full-scale BDI requires approximately 5e10 minutes to administer, whereas the short form requires approximately 5 minutes. Estimates of internal consistency for the full-scale and short-form BDI have been acceptable (0.82e0.91; Gallagher, 1986; Gallagher, Nies, & Thompson, 1982; Kim, Pilkonis, Frank, Thase, & Reynolds, 2002; Scogin, Beutler, Corbishley, & Hamblin, 1988) in both normal and depressed older adults. Estimates of testeretest reliability and concurrent validity have also been acceptable (0.77e0.90; Gallagher et al., 1982; Giordano et al., 2007; Scogin, 1994). Using a cutoff of 10, the full-scale BDI demonstrated good sensitivity and specificity with older adult depressed outpatients (sensitivity ¼ 100%, specificity ¼ 96%; Olin et al., 1992), medical outpatients (sensitivity ¼ 89%, specificity ¼ 82%; Norris, Gallagher, Wilson, & Winograd, 1987), and medical inpatients (sensitivity ¼ 83%, specificity ¼ 65%; Rapp, Parisi, Walsh, & Wallace, 1988). A cutoff score of 17 yielded a sensitivity of 50% and specificity of 92%, suggesting that a cutoff of 10 would be the best score if one is screening for depression. Using discriminant function analysis to examine the classification accuracy of the BDI, Bentz and Hall (2008) obtained adequate sensitivity of 72.5% and specificity of 80.9% in an inpatient, mostly cognitively impaired, geriatric sample. The 13item short form demonstrated good sensitivity (97%) and adequate specificity (77%) at a cutoff score of 5 (Scogin et al., 1988). The BDI can be divided into psychological (1e0.4) and somatic items (15e21). Rapp and coauthors (1988) also found that using a cutoff score of 5 for the psychological items yielded better indices of sensitivity (75%) and specificity (92%) than when combined with the somatic items in medical inpatients. Scogin and associates (1988) obtained sensitivity and specificity estimates of 77% and 97%, respectively, using the cutoff score of 5 with non-patient older adults and a group diagnosed with major depression. These results reinforce the need to consider the influence of older adults’ somatic complaints when assessing depression, particularly among medical patients. The BDI correlates moderately to highly with the Geriatric Depression Scale in various inpatient and community-dwelling older adult populations (Allen-Burge, Storandt, Kinscherf, & Rubin, 1994; Giordano et al., 2007; Snyder, Stanley, Novy, Averill, & Beck, 2000). Gallagher et al. (1982) found moderately high testeretest stability in older adult community volunteers and outpatients diagnosed with depression. However, Kendall and colleagues (1987) argue cogently for the use of multiple assessment periods, noting that in spite of the relatively high testeretest coefficients obtained with the BDI, over 50% of individuals scored above a defined cutoff change classification following retesting within hours, days, or one to four weeks. They argue that the overall stability of the measurement appears primarily due to scores from non-depressed subjects. Among the positive features of the BDI are the fact that it has been evaluated frequently with generally positive outcomes and is brief, easily scored, and easily administered (Scogin, 1994). On the negative side, individuals with cognitive impairment may have difficulty completing the BDI, particularly the Guttman response scale (Edelstein et al., 2008). This difficulty is reflected by higher
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
false positive rates in Alzheimer’s patients (Wagle et al., 2000). Interestingly, these differences cannot be attributed to somatic symptoms. However, the somatic content of some items may complicate interpretation of scores, as the complaints can result from depression, physical disorders, or both. Olin et al. (1992) reported a high rate of difficulty by older adults in completing the BDI. Forty-six percent of community-dwelling older adults endorsed multiple responses on at least one item and 12% failed to complete at least one item. Depressed individuals were more likely to fail to complete at least one item correctly. Finally, Allen-Burge et al. (1994) reported gender differences in the BDI, with lower detection of depressive symptoms in men. Moreover, Jefferson, Powers, and Pope (2001) found that older women may be more hesitant to complete the BDI than other measures of depression. Overall, the BDI is a useful screening instrument for depression. A second version of the Beck Depression Inventory (BDIeII; Beck, Steer, & Brown, 1996) included older adults in the normative sample and addressed many of the problems noted in the BDI. Although the number of items and response style remains the same as with the original version, the item content was modified to address all DSM-IV criteria for Major Depressive Disorder and rates behavior over the past two weeks. Senior et al. (2007) administered the BDIeII via telephone and obtained good reliability and validity with older adults diagnosed with generalized anxiety disorder. The BDIeII has good internal consistency in community-dwelling older adults (Norris et al., 2004; Segal, Coolidge, Cahill, & O’Riley, 2008), older cardiac patients (Low & Hubley, 2007), and women residing in retirement communities (Jefferson et al., 2001). The BDIeII has growing support in the research literature for use with older adults and is a useful update of the BDI for use with older adults. In addition, the Beck Depression InventoryeFast Screen for Medical Patients (BDIeFS; Beck, Steer, & Brown, 2000), previously known as the Beck Depression Inventory for Primary Care, is a 7-item scale that omits somatic items. It maintains the item structure from the BDIeII and rates items occurrence over the past two weeks. The BDIeFS demonstrated high sensitivity and specificity in older adults with health problems (Scheinthal, Steer, Giffen, & Beck, 2001), and adequate reliability in older adult post-stroke patients (0.75; Healey, Kneebone, Carroll, & Anderson, 2008) and geriatric outpatients (0.83; Scheinthal et al., 2001). A cutoff score of 4 produced a sensitivity of 100% and a specificity of 84% in an older adult outpatient population. The BDIeFS is a quick alternative to the full BDI or BDIeII. It shows potential for use with older adults, particularly those with medical conditions. However, further research is needed to fully recommend its use as a standard assessment of depression in older adults.
Geriatric Depression Scale The Geriatric Depression Scale (see Appendix A) was developed specifically for use with older adults and contains 30 items. Each item is scored 0 to 1 for a total score range of 0 to 30. The GDS utilizes a simple “yeseno” item format, omits somatic items, and demonstrated utility when used over the telephone (Burke, Roccaforte, Wengel, Conley, & Potter, 1995). Recommended cutoffs for the fullscale version range from 10e16, with sensitivity and specificity varying in different subject populations (Fiske, Kasl-Godley, & Gatz, 1998; Harper, Kotik-Harper, & Kirby, 1990; Watson, Lewis, Kistler, Amick, & Boustani, 2004). Lower accuracy was found in healthy, highly-educated communitydwelling older adults (Watson et al., 2004). Reliability and validity evidence has been established for older, medically ill outpatients (Norris et al., 1987), non-cognitively impaired nursing home residents (Lesher, 1986; Smalbrugge, Jongenelis, Pot, Beekman, & Eefsting, 2008), older adults diagnosed with GAD (Snyder et al., 2000), and hospitalized older adults (Rapp et al., 1988). Kieffer and Reese (2002) analyzed reliability across 338 studies using the GDS and found a mean reliability of 0.85. Evidence supporting the use of the GDS with cognitively impaired individuals is mixed, with Feher et al. (1992) finding it a valid measure of mild to moderate depressive symptoms in Alzheimer’s
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patients with mild to moderate dementia; although some dementia patients disavow memory loss and tend to deny depressive symptoms on the GDS. This response bias could account for the less than desirable findings in some studies employing the GDS with dementia patients. Hyer and Blount (1984) found that the GDS discriminated between depressed and non-depressed older adult psychiatric patients, and had better sensitivity and specificity than the Zung Self-Rating Depression Scale (SDC) (Zung, 1965) and the Hamilton Rating Scale for Depression (HRSD) (Hamilton, 1960; 1967). Lichtenberg, Steiner, Marcopulos, and Tabscott (1992) found moderate sensitivity (82%) and specificity (86%) with dementia patients in a long-term care facility using the diagnosis of a psychiatrist as the criterion measure. Using discriminant function analysis to examine the classification accuracy of the GDS, Bentz and Hall (2008) obtained sensitivity of 82.6% and specificity of 81.3% in an inpatient, mostly cognitively impaired, geriatric sample. Allen-Burge et al. (1994) reported gender effects on the GDS, with poorer detection of depression in males. In addition, Olin et al. (1992) reported a mild level of difficulty by older adults in completing the GDS. Eight percent of community-dwelling older adults endorsed both responses (yes and no) on at least one item and 14% failed to complete at least one item. Depressed individuals were more likely to fail to complete at least one item correctly. Ott and Fogel (1992) found a moderately strong correlation (r ¼ 0.77) between the GDS and the Cornell Scale for Depression in Dementia (CS; Alexopoulos et al., 1988) in patients with mild dementia (Mini-Mental State Exam [MMSE; Folstein et al., 1975] of 22 or less), but a weaker relationship between the two with increased cognitive impairment. Stiles and McGarrahan (1998), in their review of the GDS literature, present the cutoff scores associated with levels of sensitivity and specificity for virtually all GDS studies with older adults. Various cutoff scores have been suggested, varying to some extent by the sample population characteristics. Stiles and McGarrahan recommend cutoff scores of 11 for maximal sensitivity and 14 for higher specificity. A 15-item short form of the GDS is also available (Lesher & Berryhill, 1994) with high internal consistency (r ¼ 0.88). Lesher and Berryhill found a strong relation between scores on the long and short forms of the GDS (r ¼ 0.89) and similar sensitivity and specificity with heterogeneous diagnostic groups. (See also Cwikel & Ritchie, 1988.) Baker and Miller (1991) found support for its sensitivity and specificity when used with medically ill skilled nursing home residents, whereas Burke, Roccaforte, and Wengel (1991) found less support when used with cognitively impaired individuals. Recommended cutoff scores vary from 5e7 (Almeida & Almeida, 1999; Haworth, Moniz-Cook, Clark, Wang, & Cleland, 2007; Lesher & Berryhill, 1994) in various older adult populations. Brown, Woods, and Storandt (2007) examined the factor structure of the GDSe15 in samples of nondemented, demented, and depressed older adults. A 2-factor model, including Life Satisfaction and General Depressive Affect factors, was stable across the non-demented and demented samples but only 1-factor was evident in the depressed older adults, suggesting that poor life satisfaction impacts scores on the GDSe15. Overall, the utility of the GDS appears to diminish with increases in cognitive impairment. Although the short form may be useful when time constraints or fatigue are issues, the longer form appears to be more reliable and valid (Stiles & McGarrahan, 1998). The GDS appears to be a useful screening instrument for depression in older adults. It was developed for use with older adults, employs a yeseno format that is relatively easy to use with cognitively impaired older adults, and has been validated with a wide range of populations. On the less positive side, results with cognitively impaired populations have been mixed (Korner et al., 2006). As a practical measure, Stiles and McGarrahan (1998) offer the following approach to the use of the GDS in individuals suspected of cognitive impairment. Initially screen the older adult for cognitive impairment using the MMSE. If the MMSE score is less than 15, the GDS score is suspect and can be disregarded as unreliable. However, if the MMSE score is below 24, the GDS cutoff of 14 is suggested.
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
Center for Epidemiological StudieseDepression Scale The Center for Epidemiological StudieseDepression Scale (CESeD; Radloff, 1977), designed for large-scale epidemiological studies in the general population, is a 20-item self-report inventory that can be completed in approximately 5 minutes. Each item is scored 0 to 3 on a Likert-type scale for frequency of symptoms in the last week, for a total score range of 0 to 60. It consistently demonstrates four factors: depressive affect, well-being, somatic symptoms, and interpersonal relations across multiple older adult samples (Hertzog, Van Alstine, Usala, Hultsch, & Dixon, 1990; O’Rourke, 2005; Williams et al., 2007), although some items cross factors across studies. The suggested cutoff for depression is a score of 16 or more. However, as seen in cutoff scores for all the measures, some studies suggest this may be too low for some older adult populations, producing too many false positives (Haringsma, Engels, Beekman, & Spinhoven, 2004; Himmelfarb & Murrell, 1983), and too high for detecting depression in healthy populations (Watson et al., 2004). Split-half and coefficient alpha estimates of internal consistency (0.85 to 0.92) reported by Radloff were high across age, sex, geographic, and racial and ethnic subgroups. High reliabilities were also reported in community-dwelling older adults (0.82; Lewinsohn, Seeley, Roberts, & Allen, 1997), older medical inpatients (0.86; Schein & Koenig, 1997), and older adult caregivers (0.88; O’Rourke, 2005). High rates of false positives with the suggested cutoff score of 16 were reported by Schein and Koenig (1997) in medical patients. They suggest a two-stage approach to the use of the CESeD in this population to improve the diagnostic efficiency of the instrument. First, examinees must meet the minimum cutoff total score of 16. Second, the examinee must obtain a score of at least 4 on the depressed affect subscale. A 10-item short form of the CESeD also has been used with a cutoff score of 10 or more (Andresen, Malmgren, Carter, & Patrick, 1994). Testeretest reliability was reasonably good (r ¼ 0.71). Comparison of the CESeDe10 with the 20-item CESeD was quite favorable, resulting in only one misclassification using the CESeDe10. The strengths of the CESeD include its widespread use in epidemiological studies, the availability of norms based on a large representative sample (Himmelfarb & Murrell, 1983), its factor invariance across age groups, and its demonstrated reliability and sensitivity in older adults. A revision of the CESeD (Eaton, Smith, Ybarra, Muntaner, & Tein, 2004) has been developed to reflect changes in diagnostic criteria from the original version, but has not yet been validated in older adults. Overall, the CESeD appears to be a good instrument for screening community-dwelling older adults. On the less positive side are its response format and low specificity in several studies (see Radloff & Teri, 1986). The response format requires frequency ratings of how often one experienced symptoms over the past week, which may be difficult and somewhat less reliable among individuals with cognitive impairments. Boutin-Foster (2008) reported differential responding patterns in different ethnic groups. Latinos obtained higher scores than African Americans and Caucasians in all domains, and were three times more likely to obtain scores at or above the cutoff score. Moreover, Kohout, Berkman, Evans, and Cornoni-Huntley (1993) reported that 10% of the older adults completing the CESeD failed to complete at least one item. Its low specificity at the cutoff of 16 (Boyd, Weissman, Thompson, & Myers, 1982; Myers & Weissman, 1980; Roberts & Vernon, 1983), using a diagnosis of major depression as a criterion, suggests that it is better suited as a screening than a diagnostic instrument.
Hospital Anxiety and Depression Scale The Hospital Anxiety and Depression Scale (HADS) (Zigmond & Snaith, 1983) is a 14-item measure designed to assess anxiety and depression symptoms in medical patients, with emphasis on reducing
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the impact of physical illness on the total score. The depression items tend to focus on the anhedonic symptoms of depression. Items are rated on a 4-point severity scale. The HADS produces two scales, one for anxiety (HADSeA) and one for depression (HADSeD), differentiating the two states. Scores of greater than or equal to 11 on either scale indicate a definitive case. Kenn, Wood, Kucyj, Wattis, and Cunane (1987) reported good differentiation of depressed and non-depressed older adults, and Haworth et al. (2007) found similar results in cardiac patients, although a lower cutoff score was used to minimize false negatives. The HADSeD correlates 0.72 with the GDS and 0.61 with the HRSD in Parkinson’s patients (Mondolo et al., 2006), and 0.82 with the GDSe15 in older cardiac patients (Haworth et al., 2007). Mondolo et al. reported sensitivity and specificity with Parkinson’s patients to be 100% and 95%, respectively. Although initial studies suggest the HADSeD is a useful instrument to assess depression in older adults, Davies, Burn, McKenzie, Brothwell, and Wattis (1993) reported a high degree of false positives, with over a quarter of medical inpatients misclassified by the HADSeD. Moreover, Haworth et al. (2007) suggest the use of the GDS over the HADSeD due to the lower sensitivity and specificity of the HADSeD. Alternatively, Mondolo et al. (2006) found the HADSeD better at diagnosing depression than the GDS in Parkinson’s patients. Overall, in light of the mixed psychometric evidence, the HADSeD is probably not the best choice for depression assessment instruments for older adults at this time. Further research may yield more support for the use of this scale in older adults.
Zung Self-Rating Depression Scale The Zung Self-Rating Depression Scale (SDS) is a 20-item measure, with each item rated on a 4-point scale. It requires approximately 5e10 minutes to complete. Ranges for mild to moderate depression, moderate to severe depression, and severe depression are 50e59, 60e69, and over 70, respectively (Zung, 1967). Reliability with older adults appears to be low to moderate, which is most apparent among the oldest old (Kivela & Pahkala, 1986; McGarvey, Gallagher, Thompson, & Zelinski, 1982dcited in Fiske et al., 1998). Older adults tend to score higher than younger adults, possibly due to the somatic items on the scale (Berry et al., 1984). Kitchell, Barnes, Veith, Okimoto, and Raskind (1982) estimated the sensitivity and specificity with medically ill inpatients to be 58% and 87%, respectively. Somewhat better efficiency has been demonstrated with medical outpatients (sensitivity ¼ 82%, specificity ¼ 87%; Okimoto et al., 1982). Finally, age and sex differences have been suggested in the SDC factor structure (Kivela & Pahkala, 1986). Overall, in light of the evidence of its psychometric characteristics, the SDC is probably not the best choice for a depression assessment instrument for older adults at this time. Further research on its psychometric properties and norms may yield a more positive impression of this instrument.
Clinician Rating Scales Clinician rating scales often require somewhat more time to complete than self-report instruments, but they offer the advantages of providing an “objective” perspective on the depressive symptoms and are particularly useful with older adults experiencing moderate to severe cognitive impairment. They are commonly used in clinical research. As with the self-report instruments, each of the instruments we review has its strengths and weaknesses.
Hamilton Rating Scale for Depression The Hamilton Rating Scale for Depression (HRSD) has been considered the gold standard for assessing severity of depression and is widely used in research. The HRSD has several versions, with
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
the number of items employed ranging from 17 to 28. The 17-item version is the most commonly used and contains somatic and suicidal ideation items, although it does not include all of the items that would be necessary for the diagnosis of a major depressive episode (e.g., sleep difficulties, weight gain). Each of the behaviorally anchored items is rated on either a 3- or 5-point scale and summed to obtain the total score. Scores greater than 24 are indicative of severe depression, and scores less than 7 are indicative of the absence of depression. It correlates moderately with the BDI (0.68) in community-dwelling older adults and more strongly with the GDS (0.84) in a mixed Danish geriatric sample (Korner et al., 2006). Williams (1988) developed the Structured Interview Guide for the HRSD (SIGHeD) to address the problem of variability in inter-rater reliability resulting from the relatively unstructured nature of the original 17-item scale. The structured interview can be completed with the patient or a collateral source. Gilley et al. (1995) found low rates of symptom endorsement in Alzheimer’s patients, suggesting that the use of collateral sources may be a more valid approach in this population. Even with the increased structure, reliability remained fair to poor for half of the items (Pachana, GallagherThompson, & Thompson, 1994). Gallagher (1986) noted that approximately 20 training interviews were required to achieve acceptable reliability. In addition, Hammond (1998) found low internal reliability in geriatric medical inpatients and suggested that anxiety symptoms may confound results on the scale. On a more positive note, Korner et al. (2006) reported an inter-rater reliability of 0.90 in a geriatric sample. In addition, Rapp, Smith, and Britt (1990) found the 17-item version of the HRSD to have good psychometric properties with older medical patients and Leentjens, Verhey, Lousberg, Spitsbergen, and Wilmink (2000) and Olden, Rosenfeld, Pessin, and Breitbart (2009) established good concurrent validity with DSM-IV criteria. The HRSD may be a good alternative for older adults who have difficulty completing self-report inventories. A new version of the HRSD was presented in Williams et al. (2008) with good psychometric support in an adult sample. More research is needed on its use in older adults before it can be recommended.
Geriatric Depression Rating Scale The Geriatric Depression Rating Scale (GDRS) (Jamison & Scogin, 1992) is a 35-item clinician rating scale that contains 29 of the 30 GDS items plus six items with somatic content. The scale combines the format of the HRSD, for the purpose of obtaining severity ratings, with the content of the GDS, which de-emphasizes somatic content. Preliminary evidence of internal consistency is good (alpha ¼ 0.92). Preliminary estimates of concurrent validity with hospitalized, outpatient, and community-dwelling older adults are also good, with moderate to strong correlations obtained between the GDRS and the HRSD (r ¼ 0.83), BDI (r ¼ 0.69), and GDS (r ¼ 0.84). A cutoff score of 20 yielded 88% sensitivity and 82% specificity. The GDRS requires a trained interviewer and approximately 35 minutes to administer. An advantage of the GDRS over the HRSD is that it probably requires less experience and training to administer reliably (Scogin, 1994).
Geriatric Mental State ScheduleeDepression Scale The Geriatric Mental State ScheduleeDepression Scale (GMSSeDS) (Ravindran, Welburn, & Copeland, 1994) is a 33-item, semi-structured interview that employs a 3-point rating scale for most items. The items were drawn from the Geriatric Mental State Schedule on the basis of their ability to discriminate between depressed and non-depressed older adults, and their sensitivity to change following pharmacological treatment. The scale is intended for rating symptomatological changes of depression. The authors have presented sound evidence of its internal consistency (alpha ¼ 0.95; Spearman-Brown split half ¼ 0.92). Moreover, strong correlations were demonstrated between
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GMSSeDS scores and scores on the BDI, HRSD, and clinician ratings of severity (r ¼ 0.86, 0.91, and 0.84). A cutoff score of 18 yielded a sensitivity estimate of 97% and specificity estimate of 90% with regard to improvement following treatment (improved versus not improved). In constructing the instrument, the authors included a large number of items because the frequency of different depressive symptoms appears to be more variable in older than younger adults. The large number of items could make this a particularly sensitive instrument for monitoring symptom change, although the large number of items may make it too cumbersome for use with medical populations (Davies et al., 1993). Some symptoms (e.g., guilt, pessimism, dissatisfaction) that have been shown to be sensitive to change in younger adults were not included because the symptoms appear to continue as residual symptoms in older adults following clinical improvement in depressive symptoms. While the initial psychometric characteristics appear very promising for the GMSSeDS as an index of change in depressive symptoms, the instrument could benefit from cross validation with different older populations.
Structured Interviews Structured and semi-structured diagnostic interviews can be quite helpful to ensure reliable diagnoses for researchers. However, their utility for the practicing clinician is often limited because of the time and skills required to administer them reliably.
Structured Clinical Interview The Structured Clinical Interview (SCID) (First, Spitzer, Gibbon, & Williams, 1997) for DSM-IV has not been evaluated in older adults, but is one of the best-known and best-accepted structured interviews. There is, however, little evidence that it is used frequently in clinical practice although it is widely used in research on depression in various populations (e.g., Haworth et al., 2007). Segal, Kabacoff, Hersen, VanHasslet, and Ryan (1995) found good inter-rater reliability for major depression in older adults with the DSM-III-R version of the SCID. In their discussion of the previous edition of the SCID for the DSM-III-R, Pachana and coauthors (1994) stated that they did not find it very useful as a diagnostic standard for depression among older adults, as it appears less sensitive than they had anticipated for identifying depressive disorders. In light of the apparent limited use, lengthy administration time, and limited information on the validity and utility of the SCID with older adults, at this time we cannot recommend it for standard use with older adults.
Measures of Depression with Coexistent Dementia The assessment of depression among individuals with dementia can be a particularly challenging task due to both the overlapping symptoms of dementia and depression, and the effects of cognitive deficits in general. (For more thorough treatments of this topic see: Katz & Parmelee, 1997; Shue, Beck, & Lawton, 1997; and Storandt & VandenBos, 1994.) There is a significant need for instruments that work well in patients with dementia, considering that estimates of depressed mood among individuals with Alzheimer’s disease range from 0e87% (median ¼ 41%), and depressive disorders among this population range from 30e50% (Olin et al., 2002). When possible, information obtained from caregivers can be quite helpful in the assessment of depression, particularly in an individual with cognitive deficits (Logsdon & Teri, 1995; Stone, 1995). A few instruments have been designed specifically to be used with individuals experiencing dementia, the two most notable being the Cornell Scale for Depression in Dementia (CSDD) (Alexopoulus et al., 1988) and the Dementia Mood Assessment Scale (DMAS) (Sunderland et al., 1988).
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
Cornell Scale for Depression in Dementia The CSDD is a 19-item instrument whose items were constructed so they could be completed primarily on the basis of direct observation and interviews with the client and caregiver. Each item is rated on a severity scale of 0 to 2 with a total score range of 0 to 38. It is similar in item content to the Hamilton Rating Scale for Depression. Administration requires two steps, and requires approximately 30 minutes for completion. The first step is a semi-structured interview of the patient’s caregiver using the CSDD items to evaluate the patient’s behaviors over the past week. The second step involves an interview of the patient using the same items. The CSDD was designed to provide a severity rating once depression has been established, rather than determining whether a diagnosis is present. Nevertheless, the CSDD has been shown to differentiate between Research Diagnostic Criteria categories for depression among nursing home residents, although it failed to adequately discriminate between residents with no depression and residents with minor depression (Alexopoulus et al., 1988). Indices of internal consistency and inter-rater reliability are quite good when the scale is used with patients with dementia (alpha ¼ 0.84, kappa ¼ 0.67). Korner et al. (2006) reported high inter-rater reliability (0.84), high correlations with the GDS (0.82) and HDRS (0.91), and excellent sensitivity (0.93) and specificity (0.97) at a cutoff of 6 in a mixed dementia and normal older adult population. Overall, the CSDD may be a reasonable choice of screening instruments when assessing cognitively impaired older adults for major depression.
Dementia Mood Assessment Scale The DMAS is a 17-item rating scale and semi-structured interview, with most items scaled from 0 (within normal limits) to 6 (most severe). It was developed as a brief measure of mood in dementia patients, requiring an interview of the client and direct observation of the client over time. Approximately 20e30 minutes are required to complete the test. The scale is designed for use by trained raters, requiring skills and knowledge similar to those required for administration of the HRSD, from which part of the DMAS was derived. Symptom severity is rated on the basis of clinical observation and a semi-structured interview. Sunderland et al. (1988) found only a modest relation between DMAS and HRSD scores (r ¼ 0.47), which is rather weak concurrent validity evidence. Inter-rater reliability estimates were also modest (r ¼ 0.74 for core raters and r ¼ 0.69 for other raters). Overall, there has been limited evaluation of the DMAS. Its principal advantage is that it incorporates data from interviews and direct observation. In spite of the advantages of using these instruments designed for individuals with dementia, Katz and Parmalee (1997) concluded in their review that “of non-diagnostic methods, the Geriatric Depression Scale (GDS) seems to offer the best available assessment approach. Self-ratings of depression with the GDS appear to be reliable and valid in mild to moderate dementia” (p. 98). Their argument is that while measures obtained via the non-self-reports can be reliable and valid, even with moderately to severely impaired older adults, the attainment of adequate levels of reliability and validity requires standardization and formalization of administration.
EPIDEMIOLOGY OF BEREAVEMENT Older adults are more likely to experience the death of friends, family, and loved ones than younger adults. For many, learning to cope with death and loss is simply part of aging. The death of a spouse is considered to be one of life’s greatest stressors (Holmes & Rahe, 1967). According to the U.S. Census Bureau (2008b), an estimated 14% of men, and 42% of women, over the age 65
Definition and Diagnostic Issues
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and older are widowed. Among those aged 85 and older, 38% of men and 76% of women are widowed. Grief is a part of the human experience. However, even the normal grief process can be incredibly stressful. In addition to coping with feelings of loss and loneliness, older adults who have lost a spouse or partner may need to learn new skills and take over new responsibilities (Anderson & Dimond, 1995). Spousal bereavement is associated with poorer physical health (Charlton, Sheahan, Smith, & Campbell, 2001; Christakis & Allison, 2006; Kowalski & Bondmass, 2008), and lower levels of psychological well-being (Thuen, Reime, & Skrautvoll, 1997). Despite the fact that loss is common among older adults, the grief response varies widely. For the majority of older adults, grief diminishes over time (Ott, Lueger, Kelber, & Prigerson, 2007). However, a subset of older adults experience complicated grief, also known as traumatic grief, or prolonged grief (Ott et al., 2007; Zisook & Shear, 2009). The following section discusses grief responses among older adults, and assessment of grief and bereavement.
DEFINITION AND DIAGNOSTIC ISSUES To clarify the terminology used to refer to the loss of a loved one, Zisook and Shear (2009) noted the differences between the terms “bereavement,” “grief,” and “mourning.” Researchers refer to bereavement as the state of having suffered a loss, while grief refers to a person’s response to a loss, including emotional, functional, cognitive, and behavioral reactions. Mourning refers to the cultural and social behavioral manifestations of grief, including funerals and burial rituals. However, the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revised (DSM-IV-TR; American Psychiatric Association, 2000) uses the term “bereavement” rather than “grief” to describe the reaction to the loss of a loved one. Complicated grief is the term used to refer to intense and prolonged grief that is associated with an array of negative outcomes (Zisook & Shear, 2009). However, there are still no official or formal diagnostic criteria for complicated grief, and even the terminology used to describe the phenomenon varies throughout the literature. Some describe “complicated grief,” others use the term “traumatic grief,” and others use the term “prolonged grief disorder.” For the sake of simplicity, we will refer to the set of symptoms described above as “complicated grief” in this chapter.
Normal Bereavement Before discussing complicated grief, we will discuss a typical, or uncomplicated, grief response. Please note, however, that the grief response varies widely according to individual, circumstantial, and cultural factors. Characterization of a universal “normal” grief response is difficult, if not impossible. However, some of the pieces of the grieving process seem to be common. Older adults who are grieving endorse feelings of stress, difficulty dealing with everyday tasks, and loneliness, but also endorse positive feelings about their loved one (Lund, 1998). In a longitudinal study of bereavement in older adults, depressed mood, tearfulness, and loneliness were found to be fundamental symptoms of grief (Grimby, 1993). The grief response is sometimes described in stages. According to stage theories of grief, people who are bereaved first experience an initial phase of shock and disbelief, then a phase of depression and mourning, followed by a period of resolution, in which the individual recovers and is able to move forward in life (Shuchter & Zisook, 1993; Zisook & Shuchter, 1996). However, more recent research suggests that stage theories of grief cannot account for the variability in the way that people experience loss (Zisook & Shear, 2009).
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
Although some studies have shown that grief usually lasts for one year (Norris & Murrell, 1990), others indicate that it is not unusual for people to experience symptoms of grief for a significantly longer period of time (Kowalski & Bondmass, 2008; Pasternak et al., 1991). A longitudinal study of spousal bereavement among older adults showed that most bereaved older adults improved over the course of 18 months (Ott et al., 2007). Specifically, Ott and colleagues found that most older adults experienced an increase in symptoms of grief alone, or symptoms of grief and depression, that mitigated with time. The majority of the remaining participants met the proposed criteria for complicated grief.
Factors That Affect Grief Response Certain factors, both personal and situational, can have an impact on the bereavement process. Studies of the effects of gender on grief have yielded varied results. In their chapter discussing gender and cultural variations of grief, Wisocki and Skowron (2000) reported that some studies found that men have poorer outcomes than women following the death of a spouse, whereas other studies found that women have poorer outcomes than men. There is also evidence that men and women experience bereavement similarly (Lund, Caserta, & Dimond, 1986). Wisocki and Skowron (2000) discuss possible reasons for this discrepancy, including differences in the outcome variables examined and study designs. The presence of depression before the death of a loved one is a predictor of depression after the death (Gilewski, Farberow, Gallagher, & Thompson, 1991; Norris & Murrel, 1990). Higher levels of pre-existing depression are associated with higher levels of depression after the loss. Further, existential factors affect the grieving process. Those with higher levels of religiosity, spirituality, and personal meaning had a greater sense of personal well-being after the loss of a spouse (Fry, 2001). Moreover, a study of widowed men and women age 50 and older showed that experiencing happiness, laughter, and humor in daily life after a loss is associated with lower levels of grief and depression (Lund, Utz, Caserta, & de Vries, 2008). In addition to individual characteristics, certain relationship and situational factors have been found to affect the grieving process. The nature of the marital relationship has been shown to affect outcomes. Widows and widowers who reported being more dependent on their spouse were more likely to experience chronic grief (Ott et al., 2007). The Changing Lives of Older Couples (or CLOC) study examined other factors that affected grief outcomes (see review by Carr & Utz, 2001). Those who had a close marriage reported more symptoms of yearning for their spouse after death than those who reported having a troubled marriage (Carr et al., 2000). Beyond the quality of the marriage, the CLOC study found that circumstances surrounding the death of a spouse affected grief outcomes. When widowed persons reported that their spouse had experienced significant pain at the time of death, they were more likely to endorse higher levels of anxiety, anger, and yearning for their spouse (Carr, 2003). Carr (2001) also found that widowed persons who reported that their spouse had died as a result of health care provider negligence reported higher levels of anger. Interestingly, widowed persons who had placed their spouse in a nursing home facility reported better outcomes than those whose spouse lived at home at the time of death (Carr et al., 2000). Ott and colleagues (2007) examined other factors surrounding the nature of the death. A sudden death was associated with chronic grief. Similarly, chronic grief was associated with feeling less prepared for the death. When a spouse died by suicide, or a form of stigmatized death (i.e., AIDS), the bereavement period was especially difficult, particularly for widowers (Gilewski et al., 1991). The poorer outcomes may have resulted from diminished social support.
Definition and Diagnostic Issues
23
Bereavement and Depression The DSM-IV-TR recognizes that people often experience depressive symptoms following the death of a loved one, including depressed mood, insomnia, loss of appetite, and weight loss. However, it specifies that major depressive disorder should be diagnosed only if symptoms persist for more than two months after the death (American Psychiatric Association, 2000). Bereavement can be recorded as a V-Code, indicating a possibly clinically relevant condition. Moreover, the DSM-IV-TR outlines certain symptoms that can help to differentiate a normal grief reaction from major depressive disorder, including: 1) Guilt about things other than actions taken or not taken at the time of the death; 2) Thoughts of death other than the survivor feeling that he or she would be better off dead, or should have died with the deceased person; 3) Morbid preoccupation with worthlessness; 4) Marked psychomotor retardation; 5) Prolonged and marked functional impairment; and 6) Hallucinatory experiences other than thinking that he or she hears the voice of, or transiently sees the image of, the deceased person (pp. 740e741). Zisook, Paulus, Shuchter, & Judd (1997) conducted a longitudinal study that examined the prevalence of depressive disorders after the loss of a loved one. At two months after the loss, 20% of bereaved individuals met criteria for major depressive disorder. Another 20% met criteria for minor depression, and 11% met criteria for subsyndromal depression. Nearly half (49%) did not meet criteria for any type of depressive disorder (Zisook et al., 1997). Thirteen months after the loss, the percentage meeting full criteria for major depressive disorder dropped to 12%. Of the remaining, 17% met criteria for minor depression, 10% met criteria for subsyndromal depression, and 62% met criteria for no depressive disorder (Zisook et al., 1997). The rates of depression dropped even lower at 25 months after the loss. At that time, only 6% met criteria for major depressive disorder, 13% met criteria for minor depression, and 11% reported subsyndromal depression. A full 70% did not meet criteria for any depressive disorder (Zisook et al., 1997). Though many people who are experiencing grief endorse feelings of profound sadness, a minority meet full criteria for major depressive disorder, and the prevalence of major depressive disorder declines with time. Differentiating between an episode of major depressive disorder and grief can be challenging, given the often similar presentations (e.g., depressed mood and tearfulness). Further complicating the issue, the loss of a loved one is a major stressor that can sometimes trigger a depressive episode. However, differences can distinguish grief from major depressive disorder. People who are grieving generally experience both positive and negative emotions, in contrast to the pervasive depressed mood that characterizes major depressive disorder (Zisook & Shear, 2009). Further, depressed mood among those who are bereaved tends to be tied to reminders of the deceased, in contrast to the pervasive depressed mood of major depressive disorder (Zisook & Shear, 2009). Many argue that the DSM-IV-TR lacks a clear set of criteria that differentiates normal grief from depression, and normal grief from complicated grief.
Complicated Grief To adequately capture the experience of abnormal grief, many researchers have advocated for the addition of a diagnosis of complicated grief to the DSM. Several sets of similar criteria have been proposed. One set of criteria, developed by Horowitz and colleagues (2003), includes a current experience, lasting at least 14 months after a loss, of anhedonia, intrusive thoughts of the deceased, yearnings, feelings of loneliness, and disrupted sleep patterns. Jacobs, Mazure, and Prigerson (2000)
24
CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
suggest an alternate set of criteria, including a current disturbance lasting at least two months after a loss, of separation distress (e.g., yearning for or preoccupation with the deceased) and symptoms of trauma (e.g., avoidance, feelings of numbness, or feelings of emptiness). In an attempt to clarify the concept of complicated grief, a panel of grief and trauma experts met for a consensus conference to develop criteria for complicated grief (Prigerson & Jacobs, 2001). The consensus criteria include daily or marked separation distress (e.g., yearning, intrusive thoughts about the loss, searching for the deceased, or loneliness) and daily or marked symptoms of trauma (e.g., a sense of hopelessness about the future, disbelief about the death, or feelings of numbness), lasting at least six months, and causing significant impairment (Prigerson et al., 1999). Many advocate for the addition of complicated grief to the DSM-V. Studies have shown that symptoms of complicated grief are distinctly different from normal, or uncomplicated, grief (Boelen & van den Bout, 2008; Dillen, Fontaine, & Verhofstadt-Deneve, 2008). Further, the symptoms of separation distress and trauma associated with complicated grief are distinctly different from bereavement-related depression and anxiety, and are predictive of worse outcomes (Prigerson et al., 1995a; Prigerson et al., 1996). Research shows conflicting evidence as to whether symptoms of complicated grief are resistant to traditional treatments for depression (Reynolds et al., 1999; Zisook, Shuchter, Pedrilli, Sable, & Deaciuc, 2001). An estimated 10% of bereaved individuals meet the proposed criteria for complicated grief (Shear & Shair, 2005). Among psychiatric outpatients who have experienced a significant loss, the prevalence of complicated grief jumps to almost one-third (Piper, Ogrodniczuk, Azim, & Weideman, 2001). Complicated grief is associated with poorer physical and mental health (Ott, 2003; GallagherThompson, Futterman, Farberow, Thompson, & Peterson, 1993). People who experience symptoms of complicated grief six months after the loss of a spouse are at greater risk for cancer, heart disease, and changes in eating pattern at 13 and 25 months after the loss (Prigerson et al., 1997). Moreover, complicated grief substantially increases risk of suicide (Latham & Prigerson, 2004; Szanto et al., 2002). For these reasons, it is important to identify pathological grief.
Multicultural Issues Recognizing the importance of correctly identifying abnormal grief responses, clinical assessment should consider cultural variations in grief. This section discusses the considerable heterogeneity in grief responses and mourning rituals across different ethnic populations. Wisocki and Skowron (2000) discuss cultural variations in the expression of emotions following a loss, conceptualizations of the presence of the dead, in body or in spirit, after death, community and family involvement in mourning rituals, and the manner in which people deal with memories of the dead. In some cultures, elaborate mourning rituals are believed to be necessary to assist the dead to an afterworld. For example, in the Hmong culture, a 13-day ritual is completed to allow the soul of the dead to pass to the afterlife (Bliatout, 1993). In contrast, other cultures believe that the soul of the dead remains on earth. Many homes in the Japanese culture maintain altars and individuals make offerings to their deceased ancestors throughout their lives (Wiscocki and Skowron, 2000). The expression of grief can vary greatly from culture to culture as well. In Egyptian culture, the death of a close loved one is often associated with an extended period of depression (Irish, Lundquist, & Nelsen, 1993). However, other cultures do not display typical grief reactions. Several recent studies have examined differences in grief reactions among African American and Caucasian individuals. Some have found no differences in either the clinical presentation of grief, or treatment outcomes (Cruz et al., 2007). One study of race and grief in widowed older adults showed no differences in overall severity of grief symptoms (including yearning, symptoms of depression and anxiety, and shock), but lower levels of despair and anger were found among African American
Bereavement Assessment Instruments
25
widows and widowers (Carr, 2004). In addition, African American widows and widowers reported higher levels of support from children, more religious participation, and higher levels of marital conflict before the loss (Carr, 2004).
BEREAVEMENT ASSESSMENT INSTRUMENTS In the following section, we discuss several measures used to assess grief. However, few of the available measures have been validated for use with older adults. We discuss several widely used bereavement assessment instruments, but, since there is little psychometric data, we encourage caution when using these instruments with older adults.
Texas Revised Inventory of Grief The Texas Revised Inventory of Grief (TRIG) (Faschingbauer, Zisook, & DeVaul, 1987) is a 21- item instrument used to assess symptoms of grief. Clinically, the scale is used to measure adjustment and to track change following a loss. Scores can range from 0 to 65 with higher scores indicating increased grief. The items reflect common symptoms of grief and are rated on a 5-point Likert-type scale, where responses range from “completely true” to “completely false.” The TRIG has two subscales: one that assesses current feelings about the death and one retrospective subscale that assesses feelings at the time of the death. Both subscales demonstrated good testeretest reliability (0.86 for the present feelings and 0.77 for the retrospective account). Further, the TRIG demonstrated good predictive validity in a sample of older adults in a study conducted by Gallagher, Breckenridge, Thompson, and Peterson (1983), and has been used extensively with adults over age 55 (Thompson, Gallagher-Thompson, Futterman, Gilewski, & Peterson, 1991). The TRIG has been translated into both French and Spanish (Garcia, Landa, Trigueros, & Gaminde, 2005; Paulhan & Bourgeois, 1995). The Spanish version has been validated for use in a sample of Latino older adults (Wilson, 2007). The TRIG has been criticized for containing repetitive items and for containing items that may characterize typical grief reactions (e.g., “No one will ever take the place in my life of the person who died.”). Further, it may be difficult for older adults to retrospectively recall past feelings.
The Grief Experience Inventory The Grief Experience Inventory (GEI) (Sanders, Mauger, & Strong, 1985) is a 135-item scale used to measure grief reactions. Individuals are asked to respond with a “yes” or “no” to each of the items. It is organized across nine subscales (despair, guilt, anger, social isolation, loss of control, depersonalization, somatization, rumination, and death anxiety). Cronbach’s a ranges from 0.52e81, indicating moderate support for internal consistency (Hansson, Carpenter, & Fairchild, 1993; Tomita & Kitamura, 2002). The GEI has received criticism because it is a lengthy measure. Older adults may be especially susceptible to measure fatigue. Further, it has been criticized for only allowing a dichotomous “yes” or “no” response. A shortened version of the GEI was developed by Lev, Munro, and McCorkle (1993). This 22-item version utilizes a six-point Likert-type scale to assess severity of grief symptoms. Lev and colleagues (1993) reported good internal consistency (a ¼ 0.93) and sensitivity to grief. Although the more complicated response mode may be confusing to older adults, the abbreviated scale reduces fatigue, and appears to be a more efficient scale for assessing grief. However, there are no studies examining its use specifically among older adults.
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
Inventory of complicated grief Prigerson and colleagues developed the Inventory of Complicated Grief (ICG) (Prigerson et al., 1995b) to assess the symptoms of complicated grief (see Appendix B). The scale contains 19 items that are rated on a scale from 0 to 4, where 0 indicates “not at all” and 4 indicates “severe.” Total scores range from 0e76 with higher scores indicating more distress. A score of 25 or greater defines complicated grief. When tested in a sample of older adults who had lost a spouse, the ICG demonstrated high internal consistency (Cronbach’s a ¼ 0.94) and good testeretest reliability (0.80). Further, the ICG correlated highly with both the TRIG scores (r ¼ 0.87) and Beck Depression Inventory scores (r ¼ 0.67) indicating convergent validity. Further, bereaved older adults with higher ICG scores were significantly more impaired (mentally, physically, and socially) than those with lower ICG scores.
Case Study 1 You are a consulting psychologist for a nursing home. Susan, a 75-year-old resident, is referred to you by the Director of Nursing, who is concerned about Susan’s apathy, irritability, crying spells, and withdrawal from social activities. Susan complains of difficulties with concentration and memory, and has experienced difficulty remembering the topic of recent conversations. She occasionally becomes disoriented and is frustrated and angry when this occurs. You peruse Susan’s chart and find that she has a family history of Alzheimer’s disease, but no known history of other mental disorders. She is currently being treated for hypothyroidism, gastrointestinal reflux disease, and hyperlipidemia. Her medications include levothyroxine sodium, omeprazole, and atorvastatin, respectively. A discussion with the unit nurse reveals that Susan’s hypothyroidism is apparently well controlled in light of her thyroid stimulating hormone levels, which suggests that the possible depression symptoms are unlikely due to her hypothyroidism. None of the common adverse effects of omeprazole and atorvastatin include symptoms consistent with those of which Susan complains. Susan has had no medication changes in the past four weeks. She has lost eight pounds in the past three weeks, placing her just under her ideal weight range. Susan was admitted to the nursing home two months ago following surgery to repair a hip fracture resulting from a fall in her home. Because Susan lived alone, she was unable to care for herself following the initial rehabilitation following surgery. When you approach Susan in her room, you find her lying in her bed and crying in the middle of the day. She reports that she does not want to talk for very long but agrees to do so the following day. You obtain informed consent from Susan to speak with her daughter, who lives in another state and is Susan’s agent under a medical power of attorney. Susan’s daughter expresses concern about her mother and reports that she had never seen her mother like this before the hip fracture. Her mother was characterized as energetic, cheerful, and involved in several social activities. You learn from her daughter that Susan’s memory complaints and disorientation began soon after her hip surgery, as did her symptoms of depression. When you approach Susan for the interview the next day, she seems surprised to see you and apologizes for forgetting the appointment. You noticed that as she moved very slowly with a walker down the hall, she appeared unsteady at times. She seemed to hesitate and look around between steps as she proceeded into the conference room that you are using for the interview. She is still wearing her bedclothes, apparently from the night before, and her hair is uncombed, even though it is 3:00 p.m. She has forgotten her glasses even though the nurse reminded her to bring them just before she left her room. Susan sits in a comfortable chair at a table and you inform her of the reason for the interview. As you interview her, she is polite but tearful. She reports that she is not interested in activities that she formerly enjoyed, has difficulty sleeping (awaking early in the morning), her appetite is poor, her memory and concentration are markedly impaired (a source of great distress for her), and she reports feeling worthless and unhappy. Susan denies suicidal ideation and describes several reasons for not taking her life. You find that she frequently needs to be prompted to complete sentences because her sentences trail off or she stares out the window. On several occasions, she asks you to repeat questions, and reports that she has forgotten them. In light of the information you have gathered, you are uncertain whether Susan is experiencing dementia, depression, or both. You decide to: (a) further observe Susan’s behavior; (b) administer a depression screening instrument (GDS rather than BDI due to possible cognitive deficits); (c) administer the Mini-Mental State Examination (MMSE) to screen for cognitive deficits; and (e) discuss the temporal sequence of Susan’s symptoms with Susan and her daughter. Susan obtains a score of 19/30 on the MMSE, suggesting possible cognitive deficits. The items missed pertain to orientation, attention, and memory. You recall that depression can affect performance on these items. You
Bereavement Assessment Instruments
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observe Susan at various times of the day and find that she leaves her room only for meals. When other residents approach her, she either complains or does not respond. They quickly leave her alone. Results of the GDS administration suggest that Susan is experiencing moderate to severe depression, with symptoms of fatigue, insomnia, decreased activities, depressed mood, poor concentration, tearfulness, weight loss, and psychomotor retardation. Based on her memory complaints and possible deficits, disorientation, possible gait disturbance, and low MMSE total score, you refer Susan to a neuropsychologist to explore these deficits and determine to what extent they may be transient, and whether they are more likely due to depression or dementia. Results of the neuropsychological evaluation indicate that cognitive deficits, specifically memory deficits and disorientation, are due primarily to extreme distractibility. Thus, the deficits revealed on the MMSE are likely due to her distractibility arising from her depressed mood. You recall that depression is both a risk factor for hip fracture, particularly among women, often follows hip fractures, and is associated with longer recovery. Based on your interview and observation of Susan, review of her medical records, psychological testing, information gained from Susan’s daughter, and results of the neuropsychological evaluation, you conclude that Susan is experiencing a Major Depressive Disorder secondary to her hip fracture. These results should provide treating professionals with sufficient information to begin a treatment regime. You recommend to the staff that they continue to monitor Susan’s mood and cognitive status, and assure her that her symptoms will likely improve with treatment.
Case Study 2dBereavement You are the consulting psychologist for a primary care practice. Jean, a 65-year-old widowed woman, is referred to you by her primary care doctor. Jean’s husband died suddenly of a heart attack in the home two years ago. Jean became very depressed after his death. She was very tearful, and found it hard to make it through her typical daily routine. Jean’s primary care doctor prescribed an antidepressant for her, which she has been taking for about one year. Jean has noticed some improvements but she is still very tearful, and is still “consumed” by her grief. Her husband had been in charge of the family’s finances, but since his death the responsibility has fallen to Jean. She is very behind on paying her bills, because she finds it difficult to remember to pay them. When she is able to remember to pay them, she has trouble concentrating on the paperwork. Looking over her chart, you note that she has no family or personal history of mental illness. Her doctor increased her dose of antidepressant several weeks ago, but otherwise, she has had no changes in her medications. During your first visit with Jean, you talk to her about the death of her husband. She is tearful throughout the interview. She tells you that she had always been an active person. However, since her husband died she has had trouble maintaining her home, and caring for her pets. She rarely cooks for herself, because making meals reminds her of her husband. As a result, she now weighs 115 pounds, down from 145 pounds at the time of her husband’s death. Jean reports nightly initial and middle insomnia. It takes her about 40 minutes to fall asleep each night, and she wakens frequently throughout the night. She also reports daily loss of appetite, fatigue, and anhedonia. She feels depressed nearly every day of the week, for most of the day, However, she notes that she feels especially down at dinnertime and other times when she is reminded of her husband’s absence. When you ask her about feelings of guilt, she begins to sob. She goes on to tell you that she feels guilty that she could not save her husband when he collapsed and died at her feet. Jean describes the day of his death in vivid detail. She tells you that she has rearranged the furniture in her home so she does not have to walk by the spot where he died. Considering her report, you are uncertain whether Jean is experiencing depression or complicated grief. In light of her forgetfulness with bills, you would also like to rule out the beginnings of cognitive decline. You decide to: (a) ask her to track her activities and her mood over the course of the week; (b) administer a depression measure (the BDI–II); (c) administer a bereavement measure (the ICG); (d) administer the Montreal Cognitive Assessmentda brief screen for cognitive status; (e) assess for suicidality using the Geriatric Suicide Ideation Scale (GSIS) (Heisel and Flett, 2006); and (f) continue to discuss Jean’s feelings of loss. Jean scores a 29 out of 30 on the Montreal Cognitive Assessment, placing her well in the normal range. She missed one point on the delayed recall task. Her scores on the BDI–II indicate a moderate to severe level of depression. She adamantly denies all active or passive suicidal ideation, and her score on the GSIS reflects low levels of suicide risk. Her scores on the ICG indicate a severe level of complicated grief. She endorses both symptoms of separation distress, including yearning for her husband and intense loneliness, and symptoms of trauma, including numbness and disbelief about the death. When examining her activity log, you note that her mood is low for most of the day, but that she has periods of time when she feels normal. However, her mood is always low around dinner time. Jean reiterates
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
that dinner time is especially difficult for her, because she used to enjoy cooking for her husband and sharing a meal with him. When considering a diagnosis, you recommend that she is evaluated by a physician to rule out any organic causes of her symptoms. Because this episode has lasted for over two years, you rule out acute stress disorder. You also rule out Post-traumatic Stress Disorder (PTSD), because Jean is primarily experiencing feelings of sadness, rather than the feelings of fear that typically characterize PTSD. (See Shear, Frank, Houck, and Reynolds, 2005 for a discussion of the differences between PTSD and complicated grief.) You rule out a diagnosis of dysthymia because Jean reports depressed mood for most of the day, nearly every day, indicating that you should consider a diagnosis of major depressive disorder. Based on the findings of your interview, the measures administered, and her chart, you determine that Jean is experiencing the symptoms of complicated grief and also meets DSM-IV criteria for Major Depressive Disorder. The results of the assessment will guide you in making treatment recommendations.
CONCLUSION This chapter provides an overview of conceptual, diagnostic, and practical issues associated with the assessment of late-life depression and bereavement. Commonly used assessment instruments are reviewed, followed by case studies illustrating the complexity of assessing older adults who present with symptoms of depression, complicated bereavement, or both. The empirical support for several assessment instruments has improved since the first edition of this book was published in 1999, and new instruments have appeared that show considerable promise. Nevertheless, the definitional and diagnostic issues continue to contribute to the difficulty of identifying older adults who are distressed by their symptoms but who do not meet criteria for the current DSM diagnoses. The need for multidimensional and multi-method assessment cannot be overemphasized, particularly in light of the multiple factors that can contribute to the presentation of depression and bereavement. The mounting evidence of the importance of cultural factors in the presentation and epidemiology of depression should not be ignored. Finally, there is a continuing need for assessment instrument development and refinement, particularly as we come to better understand the unique experience and presentations of older adults, and the need to address subsyndromal symptoms that can curtail daily activities and diminish quality of life.
Appendix A: Geriatric Depression Scale (GDS)
29
APPENDIX A: GERIATRIC DEPRESSION SCALE (GDS) Choose the best answer for how you felt this past week circle one *1. 2. 3. 4. *5. 6. *7. 8. *9. 10. 11. 12. 13. 14. *15. 16. 17. 18. *19. 20. *21. 22. 23. 24. 25. 26. *27. 28. *29. *30. *
Are you basically satisfied with your life? Have you dropped many of your activities and interests? Do you feel that your life is empty? Do you often get bored? Are you hopeful about the future? Are you bothered by thoughts you can’t get out of your head? Are you in good spirits most of the time? Are you afraid that something bad is going to happen to you? Do you feel happy most of the time? Do you often feel helpless? Do you often get restless and fidgety? Do you prefer to stay at home, rather than going out and doing new things? Do you frequently worry about the future? Do you feel you have more problems with memory than most? Do you think it is wonderful to be alive now? Do you often feel downhearted and blue? Do you feel pretty worthless the way you are now? Do you worry a lot about the past? Do you find life very exciting? Is it hard for you to get started on new projects? Do you feel full of energy? Do you feel that your situation is hopeless? Do you think that most people are better off than you are? Do you frequently get upset over little things? Do you frequently feel like crying? Do you have trouble concentrating? Do you enjoy getting up in the morning? Do you prefer to avoid social gatherings? Is it easy for you to make decisions? Is your mind as clear as it used to be?
Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes
No No No No No No No No No No No No
Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes Yes
No No No No No No No No No No No No No No No No No No
Appropriate (nondepressed) answers ¼ yes, all others¼ no or count number of CAPITALIZED (depressed) answers
Score: _____ (Number of “depressed” answers) Norms _______________ Normal 5 4 Mildly depressed 15 6 Very depressed 23 5 The Geriatric Depression Scale may be used freely for patient assessment according to the authors.
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CHAPTER 1 Assessment of Depression and Bereavement in Older Adults
APPENDIX B: INVENTORY OF COMPLICATED GRIEF (ICG) PLEASE fill in the circle next to the answer which best describes how you feel right now: 1. I think about this person so much that it’s hard for me to do the things I normally do. , never , rarely , sometimes , often 2. Memories of the person who died upset me. , never , rarely , sometimes , often 3. I feel I cannot accept the death of the person who died. , never , rarely , sometimes , often 4. I feel myself longing for the person who died. , never , rarely , sometimes , often 5. I feel drawn to places and things associated with the person who died. , never , rarely , sometimes , often 6. I can’t help feeling angry about his/her death. , never , rarely , sometimes , often 7. I feel disbelief over what happened. , never , rarely , sometimes , often 8. I feel stunned or dazed over what happened. , never , rarely , sometimes , often 9. Ever since s/he died it is hard for me to trust people. , never , rarely , sometimes , often l0. Ever since s/he died I feel like I have lost the ability to care about other people or I feel distant from people I care about. , never , rarely , sometimes , often 11. I have pain in the same area of my body or have some of the same symptoms as the person , never , rarely , sometimes , often 12. I go out of my way to avoid reminders of the person who died. , never , rarely , sometimes , often 13. I feel that life is empty without the person who died. , never , rarely , sometimes , often 14. I hear the voice of the person who died speak to me. , never , rarely , sometimes , often 15. I see the person who died stand before me. , never , rarely , sometimes , often 16. I feel that it is unfair that I should live when this person died. , never , rarely , sometimes , often 17. I feel bitter over this person’s death. , never , rarely , sometimes , often 18. I feel envious of others who have not lost someone close. , never , rarely , sometimes , often 19. I feel lonely a great deal of the time ever since s/he died. , never , rarely , sometimes , often
, always , always , always , always , always , always , always , always , always
, always who died. , always , always , always , always , always , always , always , always , always
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dementia: The contribution of the caregiver’s personal characteristics. Journal of the American Geriatrics Society, 47, 196e202. Zeiss, A. M., & Steffen, A. M. (1996). Interdisciplinary health care teams: The basic unit of geriatric care. In L. L. Carstensen, B. A. Edelstein, & L. Dornbrand (Eds.), The Practical Handbook of Clinical Gerontology (pp. 423e450). Thousand Oaks, CA: Sage Publications, Inc. Zigmond, A. S., & Snaith, R. P. (1983). The Hospital Anxiety and Depression Scale. Acta Psychiatrica Scandinavica, 67, 361e370. Zisook, S., & Shear, K. (2009). Grief and bereavement: What psychiatrists need to know. World Psychiatry, 8, 67e74. Zisook, S., & Shuchter, S. R. (1996). Grief and bereavement. In J. Sadavoy, L. W. Lazarus, L. F. Jarvik, & G. T. Grossberg (Eds.), Comprehensive review of Geriatric Psychiatry (2nd ed.). (pp. 529e562) Washington, DC: American Psychiatric Press. Zisook, S., Paulus, M., Shuchter, S. R., & Judd, L. L. (1997). The many faces of depression following spousal bereavement. Journal of Affective Disorders, 45, 85e95. Zisook, S., Shuchter, S. R., Pedrilli, P., Sable, J., & Deaciuc, S. C. (2001). Bupropion sustained release for bereavement: Results of an open trial. Journal of Clinical Psychiatry, 62, 227e230. Zung, W. K. (1965). A self-rating scale. Archives of General Psychiatry, 12, 63e70. Zung, W. K. (1967). Depression in the normal aged. Psychosomatics, 8, 289e292.
CHAPTER
Assessment of Anxiety in Older Adults
2 Cheryl Carmin1, Raymond L. Ownby2
1
Department of Psychiatry, University of Illinois at Chicago, Chicago, IL, USA, Department of Psychiatry, Nova Southeastern University, Fort Lauderdale, FL, USA
2
Over the course of a lifetime, anxiety disorders affect more than one in four adults in the United States (Kessler et al., 2005) making these conditions the most prevalent category of psychiatric illness affecting adults. Further, the economic burden of these conditions approximated $42.3 billion annually in 1999 (Greenberg et al., 1999). Given the increase in health care costs, inflation, and taking OCD into consideration, which was excluded in the Greenberg et al. (1999) study, this figure is undoubtedly an underestimate of the burden placed on society, especially in light of the chronic and unremitting nature of these conditions if they are left untreated. Despite anxiety disorders being more prevalent than mood disorders at any stage of adulthood, surprisingly little attention has been paid to anxiety disorders in older adults (Beck & Stanley, 1997; Kessler et al., 2005) whereas depression has received considerable attention. While there has been a limited increase in research into the treatment of specific anxiety disorders in older adults, there had not been a substantial increase in the investigation of anxiety assessment of adults in their later years since we first reviewed the literature (Carmin, Pollard, & Gillock, 1999). It is the purpose of this chapter to review the current state of knowledge regarding anxiety disorders assessment in older adults.
EPIDEMIOLOGICAL CONSIDERATIONS The prevalence of anxiety disorders appears to diminish over the course of adulthood. The replication of the National Comorbidity Survey (NCS-R; Kessler et al., 2005) examined prevalence across adult cohorts (i.e., adults aged 18e29, 30e44, 45e59, 60 and older). While the lifetime prevalence of anxiety disorders in adults under 60 years ranged from approximately 30e35%, for those 60 years and older the prevalence dropped to 15.3%. This age-related decline may provide some explanation for the inattention given to geriatric anxiety. Consistent with the NCS-R data, in a recent survey of mental disorders in older African Americans, the National Survey of American Life (NASL; Ford et al., 2007), anxiety disorders were more than twice as prevalent (13.23%) as mood disorders (6.33%) and the most frequently occurring category of psychiatric illness. Notably, Post-traumatic Stress Disorder (6.19%) and Social Phobia (4.49%) were the two most prevalent conditions in the Ford et al. (2007) study, whereas the NCS-R data found that Specific Phobia (7.5%) and Social Phobia (6.4%) were the most prevalent diagnoses. Interestingly, the Longitudinal Aging Study, which was conducted in Amsterdam, found Generalized Anxiety Disorder (7.3%) was the most prevalent condition and the overall prevalence of anxiety disorders was 10.2% (Beekman et al., 1998). However, as noted above, Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10002-8 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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regardless of the prevalence dropping by roughly half, anxiety disorders remain the most frequently occurring diagnoses across all age groups including those aged 60 and above. The epidemiological data can be both compelling and misleading. The majority of such studies survey community-dwelling individuals. In many instances, older adults may reside in alternative housing such as nursing homes or retirement communities and are not included in such studies (Bland, Newman, & Orn, 1988), thereby resulting in an underestimate of actual prevalence. However, this may have been more the case with early studies, such as the Epidemiologic Catchment Area Survey that found a 1-month anxiety prevalence rate of 5.5% in adults 65 years and older (Regier, Narrow, & Rae, 1990).
SPECIAL CONSIDERATIONS The assessment of anxiety in older persons may present issues not found when evaluating younger individuals. Perhaps most importantly, the clinician should understand the social, developmental, and medical context in which the client presents in order to understand the extent to which specific symptoms or behaviors represent pathology. This is not always a simple decision, and it is made more complex by the dearth of normative information on older persons. Interestingly, in one study of elderly persons’ fears, these differed most from the fears of adults and college students in having less frequent and intense fears of such things as economic problems, the ecology, or political issues (Croake, Myers, & Singh, 1988). Although they reported somewhat more frequent and intense fears of sickness and aging, the differences among age groups in this study were not statistically significant. Other issues that arise in consideration of anxiety in the elderly include the importance of recognizing clinically significant but subsyndromal patterns of anxiety symptoms, and the possible increased prevalence of mixed anxiety and depression in older persons. Investigators have argued that a combination of anxiety and depression symptoms, referred to as Mixed Anxiety and Depressive Disorder (MADD), may be seen more frequently in elderly persons (Schoevers et al., 2003). Psychometric evidence has accumulated to suggest a considerable overlap between anxiety and depression in the elderly (Koloski, Smith, Pachana, & Dobson, 2008). Although a full discussion of these topics is beyond the scope of this chapter, the clinician evaluating anxiety in an elderly person should be aware that anxiety syndromes in younger and older persons may be different. When evaluating anxiety symptoms that arise in later life, consideration should be given to the possibility that some symptoms may represent aspects of medical illnesses or common developmental trajectories. For example, older adults may have poorer balance than younger persons. This fact may contribute to older persons’ fear of falling, a concern that may seem irrational or exaggerated out of its developmental context. The fear may still be excessive and may affect the older individual’s quality of life and functioning, but understanding the physical basis for observed changes in balance (and the potential benefit of balance training) may help in making the assessment process more sensitive to the specific needs of the older person. For example, symptoms such as heart palpitations or shortness of breath can arise from cardiovascular or pulmonary disease but may also be symptoms of anxiety. Further, the anxious patient with chronic obstructive pulmonary disease (COPD) may have worsening of their symptoms of shortness of breath when anxiety is increased.
Case Study Ms Smith, a 75-year-old woman, was referred for psychiatric evaluation because of her pathological fear of falling. With a Beck Depression Inventory score of 12 and a GAF of 80, however, she appeared to have a single fear of near-phobic level. She had no previous history of psychological disorder. She lived with her husband of 40 years and was a happy mother and grandmother. She was treated for hypertension and hyperlipidemia with a calcium channel blocker and a statin, respectively, but no changes in her medications
Clinical Utility of Instruments to Assess Anxiety in Older Adults
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had been made recently. She had been treated with oral hormone replacement therapy during the perimenopause but had not taken any HRT for about 20 years. She arrived in the company of her husband who assisted her in walking down the hall. She leaned on his arm from the waiting area until he assisted her into the office where they were interviewed together. She had particular difficulty in crossing the threshold into the office from the hallway. Examination revealed that she did in fact have lower body weakness that had become progressively worse over the past two years. Referral to a movement disorders specialist revealed that she was suffering from Parkinson’s disease. Treatment for that disorder was initiated with considerable improvement in her gait and decreased concerns about falling.
This case study illustrates the importance of understanding the many ways in which physical diseases can be manifested as psychological symptoms. While true in all age groups, the increased frequency of some diseases in older persons makes an awareness of this issue critical. The availability of appropriate specialists for assistance in diagnosis of unusual presentations or uncommon conditions is also essential in some cases.
FACTORS INFLUENCING ANXIETY ASSESSMENT IN THE ELDERLY Also influencing the outcome of epidemiological investigations and the assessment of anxiety in general is whether the descriptive and diagnostic measures used to assess anxiety in younger adults are applicable to older individuals (Beck & Stanley, 1997a). On the one hand, some studies (e.g., Diefenbach, Stanley, & Beck, 2001; Owens, Hadjistavropoulos, & Asmundson, 2000; Shapiro, Roberts, & Beck, 1999) report age-related differences in anxiety across the lifespan. Other studies have found that anxiety symptoms are relatively invariant across age-based cohorts (e.g., Stanley, Beck, & Zebb, 1996). Thus, it has yet to be determined whether the fundamental nature and experience of anxiety evolves over the lifespan (Lawton, Kleban, & Dean, 1993). Perhaps a more salient consideration than whether individuals meet full diagnostic criteria for an anxiety disorder is whether anxiety is causing a significant disruption in the lives of older adults (Fisher & Noll, 1996). Finally, and most relevant to this chapter, is the observation that the majority of psychometric instruments used to study anxiety were developed for use with younger populations, and the psychometric properties of these instruments have remained largely uninvestigated with regard to geriatric samples. As Beck and Stanley (2001) note, either measures can be developed that are specific to older adults, or established measures can be evaluated to determine their validity and utility with the elderly, the latter approach being representative of a more economical research effort.
CLINICAL UTILITY OF INSTRUMENTS TO ASSESS ANXIETY IN OLDER ADULTS Assessment has a variety of purposes and can take several forms. From a clinical standpoint, the purpose of assessment is to aid in the process of diagnosis or to provide descriptive information that can be utilized to gain a perspective on symptoms and/or functioning, or to provide a means of gauging progress in treatment. The form that assessment takes may include a clinician administered interview, self-report, or behavioral observation. Less frequently, assessment may involve psychophysiological measurement.
Diagnostic Assessment For the purpose of diagnosis, there are two structured diagnostic clinical interviews that are most widely used, namely the Anxiety Disorders Interview Schedule for DSM-IV (ADIS-IV; Brown,
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DiNardo, & Barlow, 1994) and the Structured Clinical Interview for DSM-IV Axis I Disorders (SCID; First, Spitzer, Gibbon, & Williams, 1997). Both of these instruments have been found to yield reliable diagnoses with elderly patients (Beck & Stanley, 1997a; Segal, Hersen, Hasselt, Kabacoff, & Roth, 1993; Stanley et al., 1996). While other measures, for example the World Mental HealtheComposite International Diagnostic Interview (WMH-CIDI), have been used in large-scale epidemiological studies such as the NCS-R (Kessler et al., 2005) and NSAL (Ford et al., 2007), there has been no systematic investigation of the use of the WMH-CIDI with elderly cohorts, although the prevalence rates reported in the two noted studies are relatively consistent and more in line with expectations than earlier, similar investigations. The ADIS-IV (Brown et al., 1994) and the SCID (First et al., 1997) classify disorders based on DSM-IV criteria. Each disorder is presented in a discrete section beginning with a few key questions to screen for responses that suggest further in-depth questions are needed to confirm a diagnosis. If the screening questions are answered affirmatively, the balance of the section is administered; if not, the remainder of the section is skipped. All of the adult anxiety disorders and many pre-emptory disorders (i.e., psychosis, substance abuse, depression, dysthymia and somatoform disorders) are included in the ADIS-IV. Unlike the ADIS-IV, the SCID includes all DSM-IV diagnoses. Both of these clinical interviews are designed to be administered by a highly trained examiner. Because it requires clinical judgment to evaluate responses and determine the direction of questioning, examiners must be familiar with the diagnostic criteria for anxiety or other disorders. Administration time averages one to two hours, but could require more time if the patient endorses a significant number of symptoms indicative of comorbid diagnoses. Despite their wide use in clinical research, there are only a handful of studies which have examined the properties of either of these diagnostic measures specifically with elderly individuals. Studies using the ADIS-IV with a sample of older patients report excellent inter-rater reliability for the diagnoses of social phobia, specific phobia, and panic disorder, and moderate reliability for major depression (Beck, Stanley, & Zebb, 1996; Stanley et al., 1996). With a small sample of inpatient and outpatient elderly adults (56e84 years), Segal and colleagues (1993) found that the SCID-I (DSM-III-R, Axis I version) had good reliability for the general category of anxiety disorders and an inter-rater agreement of 94%. There is one other interview measure, the Clinician Administered PTSD Scale (CAPS), that has been developed for the purpose of diagnosis, although its use is limited to Post-traumatic Stress Disorder (PTSD). The CAPS, developed by Blake and colleagues (Blake et al., 1990), is a semistructured clinical interview. Like SCID and ADIS, the CAPS is designed for administration by a highly trained examiner. This instrument has been used extensively with elderly samples, primarily those involved in wartime events, was found to have good discriminative validity (Hyer, Summers, Boyd, Litaker, & Boudewyns, 1996), and was useful in assessing the presence and severity of current PTSD in veterans (Yehuda et al., 1995). The CAPS has also been used in a number of noncombat-related treatment outcome studies with samples that include older persons. These studies include treatment of PTSD due to motor vehicle accidents (Hickling & Blanchard, 1997) and treatment with brofaromine (Baker et al., 1995). The combined results of these studies suggest that the CAPS is an appropriate scale for use in elderly populations. In summary, while this work is encouraging, further research using the SCID to diagnose specific anxiety disorders in elderly populations is needed. In fact Kogan, Edelstein, and McKee (2000) suggest that a clear limitation in the use of either the SCID or ADIS is that more representative samples are needed in order to enhance generalizability. It is also noteworthy that all of these clinician-administered instruments require that interviewers receive substantial training, which may limit the utility of these measures in clinical rather than research settings. In addition, the use of a structured clinical interview is further limited in that these diagnostic measures can require considerable stamina on the part of elderly patients, may utilize terminology that is infrequently used or considered stigmatizing by
Clinical Utility of Instruments to Assess Anxiety in Older Adults
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older adults, or the results may be confounded by cognitive deficits (Mohlman, Gainer Sirota, King, Papp, & Gorenstein, in press).
Descriptive Measures of AnxietydGeneral Measures A number of scales have been used to either screen for or describe anxiety symptoms and their severity. Some measures are exclusive to anxiety symptoms whereas others include an anxiety subscale among the variety of syndromes or symptoms that are assessed. We have briefly described below measures that are psychometrically sound and designed specifically for use with elderly populations, or have been adopted for use with older adults.
Beck Anxiety Inventory (BAI) The BAI (Beck, Epstein, Brown, & Steer, 1988) is a self-report questionnaire measuring 21 common somatic and cognitive symptoms of anxiety. In a study of adults age 55 years and older in a communitybased outpatient facility, the BAI was found to have good discriminant validity (Kabacoff, Segal, Hersen, & Van Hasselt, 1997). Using the SCID to make a diagnostic determination, the BAI was effective in differentiating between those with and without an anxiety disorder. Two factors (somatic and subjective) best described the elderly sample and discriminated between groups (Kabacoff et al., 1997). In this elderly sample, no single cutoff score proved optimal when used to predict the presence of an anxiety disorder due to considerations regarding sensitivity (the proportion of true cases who score above the cutoff score) versus specificity (the proportion of normals who score below the cutoff point). Using a community and residential sample of older adults, the BAI demonstrated adequate internal consistency and yielded six factors with a somatic factor accounting for much of the variance (Morin et al., 1999). Morin et al. caution that given the prevalence of somatic concerns in this non-clinical sample, their results suggest a cautious use of the inventory. In a recent study, the BAI performed well on most analyses, demonstrating one of the highest correlations with measures of anxiety severity, good discriminant validity for anxiety, and a good balance between specificity and sensitivity when using the cutoff point of 15/16 (Dennis, Boddington, & Funnell, 2007). The BAI has also been used in a clinical trial comparing cognitive behavior therapy with enhanced usual treatment (Stanley et al., 2009).
Depression Anxiety Stress Scale (DASS) The DASS (Lovibond & Lovibond, 1995) has been receiving increasing support due to its strong psychometric properties (see Brown, Chorpita, Korotitsch, & Barlow, 1997). Consistent with younger samples, in older adults a 3-factor structure best fit the data. Results also indicated good internal consistency, excellent convergent validity, and good discriminative validity. Receiver operating curve analyses indicated that the DASS-21 predicted the diagnostic presence of generalized anxiety disorder and depression, as well as other commonly used measures. These data suggest that the DASS may be used with older adults in lieu of multiple scales designed to measure similar constructs (Gloster et al., 2008).
Geriatric Anxiety Inventory (GAI) The GAI (Pachana et al., 2007) is a recent addition to the anxiety assessment literature and was developed specifically for use with older adults. It is a 20-item measure of dimensional anxiety which, during its development, successfully discriminated between those with and without an anxiety disorder, as well as those with and without DSM-IV diagnosed GAD. Pachana et al. (2007) investigated the
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psychometric properties of the instrument (i.e., internal consistency, testeretest reliability, concurrent and discriminant validity, receiver operating characteristics) with a psychogeriatric sample, as well as with normal older adults. A subsequent study (Boddice & Pachana, 2008) examined the use of the GAI in a residential care setting in order to determine the utility of the instrument with elderly individuals who were experiencing cognitive impairments, and found the classification (i.e., presence or absence) of anxiety symptoms by the GAI was not significantly associated with an individual’s cognitive status in either community-dwelling or residential care samples. In addition, data supported the predictive validity of the GAI in residential care settings with respect to diagnosis of anxiety disorders.
Hamilton Anxiety Rating Scale (HAM-A) The HAM-A (Hamilton, 1959) is a clinician administered rating scale designed to assess anxiety symptom severity. Somatic, cognitive, and affective symptoms are included. A trained examiner rates the severity and intensity of 14 primarily somatic symptoms. The utility of the scale with older adults has received preliminary support (Beck & Stanley, 1997b), with Beck and colleagues (Beck, Stanley, & Zebb, 1996; Beck, Stanley, & Zebb, 1999) concluding that the HAM-A differentiated older adults with GAD from matched normal community participants.
State-Trait Anxiety Inventory (STAI) The STAI (Speilberger, Gorsuch, Luchene, Vagg, & Jacobs, 1983) is a 40-item self-report scale that assesses separate dimensions of “state” and “trait” anxiety. Examples of what the STAI measures include feelings of apprehension, tension, nervousness, and worry. Norms from the original version (STAI-X) include a small sample of elderly persons aged 50e69 years. An early study found modest construct and discriminant validity using the original version of the STAI (Patterson, O’Sullivan, & Speilberger, 1980) in adults 55e87 years old. A subsequent study supported the use of the Trait but not the State scale of the STAI in anxiety disordered older patients (Kabacoff et al., 1997). A recent study found that compared with the State Scale, the Trait Scale did not fare well in comparison with other measures of anxiety in an elderly sample (Dennis et al., 2007). Thus, despite its widespread use, there is inconsistent data supporting the use of the STAI.
Descriptive Measures of AnxietydMeasures Related to Diagnoses The instruments described above measure anxiety as a general construct. What is at least as relevant are those measures which have been developed that assess anxiety as it relates to specific diagnoses.
Panic Disorder and Agoraphobia The primary assessment targets for patients with panic disorder are panic attacks, anticipatory anxiety, and, when agoraphobia is present, phobic avoidance. Frequency and intensity of panic attacks are usually assessed via self-monitoring instruments such as panic diaries. A few instruments have been studied specifically with elderly patients diagnosed with panic disorder. Researchers used two self-report measures, the Phobia Scale (Marks & Mathews, 1979) and the Sheehan Patient-Rated Anxiety Scale (Sheehan, 1986), to assess 51 elderly patients with panic disorder (Raj, Corvea, & Dagon, 1993). Another study assessed 75 older adults with panic disorder and agoraphobia using the Stanford Agoraphobia Severity Scale (Telch, 1985), a self-report measure requesting respondents to rate their level of anxiety for each of 10 common agoraphobic situations. These studies provide some preliminary normative data on a very small number of instruments. However, a great deal more psychometric research is needed on these and other measures that could be used to assess panic disorder in the elderly.
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Generalized Anxiety Disorder Severity Scale (GADSS) Since we last reviewed anxiety assessment in the elderly, the one area that has received the greatest amount of attention is that of worry, which is a hallmark feature of GAD (Beck & Stanley, 1997). It is not entirely clear why so much attention has been focused on this one dimension and/or disorder, other than the fact that GAD was presumably the most common of the anxiety disorders affecting elderly patients. Recent epidemiological studies may question this emphasis but, the prevalence of worry notwithstanding, it is among the few areas where specific measures have been developed for use with older adults. As its name suggests, the Generalized Anxiety Disorder Severity Scale (GADSS) (Shear, Belnap, Mazumdar, Houck, & Rollman, 2006) is a 6-item interview that was developed to assess the severity of GAD symptoms. The measure was subsequently validated in a sample of 134 older adults (Andreescu et al., 2008). In this latter study, the authors concluded that the GADSS demonstrated high internal consistency and inter-rater reliabilities, and good convergent and divergent validity. However, Weiss and colleagues (Weiss et al., 2009) note that there is only mixed support for the use of the GADSS with older adults. Of concern is the fact that they found poor diagnostic accuracy, indicating a lack of divergent validity. Interestingly, Weiss at al. (2009) found that using only the three items that assessed impact, rather than frequency/duration of symptoms, provided a more accurate (and parsimonious) measure of symptom severity. The Worry Scale (WS; Wisocki, Handen, & Morse, 1986) is a 35-item self-report scale developed specifically for use with older adults. The subscales reflect severity of worry-related content concerning financial, health, and social concerns. Mean worry scores from seven studies of the original WS are available (Wisocki, 1994), and there are studies supporting the concurrent validity of the WS (Powers, Wisocki, & Whitbourne, 1992; Wisocki et al., 1986). Comparisons between the WS and anxiety dimensions of the SCL-90 found significant correlations in both community-dwelling and homebound older adults (Wisocki et al., 1986; Wisocki, 1988). With the exception of the health subscale, testeretest reliability in older adults without psychiatric diagnoses is adequate (Beck et al., 1996). To date, in older adults with and without GAD, psychometric data indicate adequate internal consistency, testeretest reliability, and convergent and divergent validity (Beck et al., 1996; Stanley et al., 1996). A recent revision to the Worry Scale expanded the number of items to 88 by including those worries specified by elderly participants in normative studies and contains additional questions about the amount of time spent worrying, the age at which worrying began and was most common, and significant life events associated with worry (Wisocki, 1994). The Penn State Worry Questionnaire (PSWQ; Meyer, Miller, Metzger, & Borkovec, 1990) is a 16-item measure of trait worry. Unlike many measures that assess worry content, the PSWQ is a content-free measure of the excessiveness, duration, and uncontrollability of worry. Strong psychometric support is available for the use of this measure in both younger and older adults (Beck et al., 1995, 1996; Beck & Stanley, 1997; Brown, Antony, & Barlow, 1992; Molina & Borkovec, 1994). In a descriptive study of GAD in the elderly (55e81 years), community-dwelling participants were diagnosed using the ADIS and compared with matched controls (Beck et al., 1996). Using self-report measures alone (PSWQ, WS social subscale, Fear Questionnaire social subscale, and the Beck Depression Inventory), near-perfect classification (95%) was achieved. These results suggest that worry, based on the PSWQ and other measures, can be reliably assessed in older adults diagnosed with GAD. Despite its widespread use, when confirmatory factor models that were developed using younger subjects were applied to an older adult sample, the data were a poor fit with both 1- and 2-factor models (Hopko et al., 2003). When the single factor model was modified by eliminating eight items, the researchers found strong fit indices, high internal consistency, adequate testeretest
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reliability, and good convergent and divergent validity. The author concluded that further psychometric work is required to assess whether the revised model is a more parsimonious method to assess late-life anxiety, possibly further indicating that the nature of worry differs in older versus younger adults. Just as in both children and younger adults, among the elderly phobias appear to be common. The Fear Questionnaire (FQ; Marks & Mathews, 1979) is a self-report instrument that provides three main scores for agoraphobia, social phobia, and blood-illness-injury phobia. Items measure the degree to which specific situations are avoided, the extent to which phobic symptoms are disturbing, and the impact of various symptoms. In a study of older community volunteers, internal consistency for the Social Phobia and Blood-Illness-Injury Phobia Scales and testeretest reliability was poor (Stanley et al., 1996). Due to equivocal psychometric performance of two of the three scales in elderly populations, the FQ should be used with care. The Fear Survey Schedule II (FSS-II; Geer, 1965) was designed primarily for research use and was normed on a college student sample. Unfortunately, it is the only version of this measure that has been used with an elderly sample (Liddell, Locker, & Burman, 1991), and no information regarding its psychometric adequacy with older adults has been provided. Fear of falling is not an uncommon concern among older adults. In response to this concern, Huang developed the Geriatric Fear of Falling Measure (Huang, 2006) based on preliminary, qualitative research with community-dwelling Taiwanese subjects. The 15-item measure has four subscales: psychosomatic symptoms (PS); adopting an attitude of risk prevention (RP); paying attention to environmental safety (ES); and modifying behavior (MB); and additional research into the psychometric properties of this measure is needed.
Social Anxiety Disorder Until recent epidemiological studies highlighted that Social Anxiety Disorder (SAD) persists into late life, conventional wisdom had dictated otherwise. As a result, there are no measures of social fears, fear of embarrassment, or constructs related to this condition that have been developed for use with socially anxious older adults. The best currently available alternative may be subscales of more general instruments that have been studied with older samples, such as the WS Social scale (Wisocki et al., 1986).
ObsessiveeCompulsive Disorder (OCD) There are several treatment outcome studies of older adults diagnosed with OCD (e.g., Calamari, Faber, Hitsman, & Poppe, 1994; Carmin & Wiegartz, 2000; Carmin, Pollard, & Ownby, 1999). However, while using widely accepted measures of OCD symptoms, there are no established norms or other psychometric data available for the measures used. One study (Stanley et al., 1996) compared responses of normal elder controls and elders with GAD on the Padua Inventory (PI; Sanavio, 1988). The PI is a 60-item questionnaire designed to evaluate obsessive compulsive symptoms. Four scales measure severity of contamination and checking rituals, and fear of losing control over mental activities and motor behaviors. Results indicated that for the normal controls, there was adequate internal consistency for the PI overall and for three of the four scales, with the Behavior Control Scale the notable exception. In the GAD group, there was evidence of convergent validity with other measures of anxiety and worry, and good testeretest reliability. While this is the first study to use the PI with an elderly clinical sample, subjects were not diagnosed with OCD. While it could be argued that there is some similarity between the intrusive thoughts related to OCD and worry characteristic of GAD, these are two different constructs. Thus, analyses of the PI with older OCD subjects is still needed.
Multicultural Issues in Anxiety Assessment in the Elderly
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Post-traumatic Stress Disorder (PTSD) Much of the research in PTSD with elderly groups has focused on dated events (e.g., WWII, the Holocaust) and less is known about age-related differences in PTSD symptomatology when the trauma occurs during later life (Beck & Stanley, 1997b). A series of studies of PTSD symptoms in Holocaust survivors (Yehuda et al., 1995; Yehuda et al., 1996) utilized a variety of PTSD measures and provide descriptive data for the measures for both elderly trauma survivors and non-exposed age-matched controls. Global effects of stressful events are measured with the combat or civilian forms of the Mississippi PTSD Scales (MISS; Watson, 1990). Neal and colleagues (Neal, Hill, Hughes, Middleton, & Busuttil, 1995) found the Combat Scale to be the most accurate measure of PTSD severity in a small sample of elderly former prisoners of war (age range ¼ 70e85 years).
MULTICULTURAL ISSUES IN ANXIETY ASSESSMENT IN THE ELDERLY The potential for different expressions of anxiety across cultural or ethnic groups is largely unexplored. Anxiety in Hispanics has been characterized as similar to that in other groups, although some have argued for a specific syndrome of ataque de nervios, a group of symptoms similar to but not the same as panic disorder (Liebowitz et al., 1994; Sadock & Sadock, 2007, p. 523). The frequency and phenomenology of these symptoms in Hispanic elderly have not been widely researched. One study (Tolin, Robison, Gaztambide, Horowitz, & Blank, 2007) showed that 26% of a group of 303 Puerto Rican primary care patients aged 50 years and older reported having had at least one episode. Their reports were closely associated with other disorders, with 84% of those reporting an episode of ataque meeting criteria for another disorder, most frequently either a depression or anxiety spectrum disorder. In an analysis of the Cornell Scale for Depression in Dementia (CSDD; Ownby, Harwood, Acevedo, Barker, & Duara, 2001; Ownby, Acevedo, Harwood, Barker, & Duara, 2008), the factor structure of this instrument was found to be essentially similar between groups of Spanish- and Englishspeaking elders with Alzheimer’s disease. One difference that emerged was the importance of somatic complaints in Hispanic patients, consistent with cultural differences in the manner in which anxiety symptoms are expressed. While the CSDD item “somatic complaints” was most directly related to other symptoms of depression in Anglos, it was more closely related to complaints of sleep and appetite disturbance in Hispanic patients. This finding could be interpreted as a more general tendency to express symptoms somatically among the Hispanic patients. In an analysis of the same group of patients with AD, Ownby et al. (2008) showed that both Spanish- and English-speaking patients could be grouped into several distinct latent classes. As one of the classes that emerged in this analysis was characterized by prominent anxiety, Ownby et al. (2008) suggest that this might either represent a group with agitated depression or with a specific anxiety disorder. The membership of Spanish- and English-speaking patients across classes, however, was not different, although the number of patients in each group was small. More substantial data are available on anxiety disorders among older African Americans. Ford et al. (2007) report data on the prevalence of DSM-IV disorders from the National Survey of American Life. They found that 23% of African Americans aged 55e93 years (mean age of 66.6 years) reported a lifetime prevalence of at least one disorder, and 13.2% reported a lifetime history of any anxiety disorder, the most common of which were PTSD (6.2%), social phobia (5.5%), and GAD (3.1%). Twelve-month prevalence of any anxiety disorder was 6.6%, with the most common being PTSD (2.9%) and social phobia (2.1%).
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CHAPTER 2 Assessment of Anxiety in Older Adults
CLINICAL ILLUSTRATIONS While OCD has been found to occur in 1.3% of older adults (Kessler et al., 2005), the occurence of OCD in late life has been regarded as a rare occurrence (Rasmussen & Eisen, 1992). Further, when the onset is coupled with a neurological problem, such as a stroke, treatment can be complicated and may often take the form of pharmacological interventions due to a perception that psychotherapy will not succeed when there is documented brain damage. Consistent with the general adult literature, reviews of OCD treatment in the elderly (Calamari et al., 1994; Pollard, Carmin, & Ownby, 1997) support the use of cognitive behavior therapy in the form of exposure and response prevention as the treatment of choice. Case Study 2 illustrates a successful combined approach involving intensive, inpatient treatment of a newly diagnosed patient with OCD (see Carmin & Wiegartz, 2000 for a complete discussion).
Case Study 2dObsessive Compulsive Disorder Treatment and Basal Ganglia Infarct The patient was a 78-year-old man experiencing a first episode of OCD. Data from the ADIS-IV and the Yale Brown Obsessive Compulsive Scale (YBOCS) (Goodman et al., 1989b; Goodman et al., 1989a) along with a clinical interview revealed that his symptoms, which began 8 months prior to his hospital admission, involved “needing to know” and fears of being unable to correctly remember names and other information. When he could not spontaneously produce an answer or was unsure, he felt compelled to neutralize the anxiety produced by his uncertainty by repeatedly reviewing or checking his accumulated lists of names and references or by engaging in mental rituals. If the information was not in his archive or he could not produce the information by “quizzing” himself, he would call friends, acquaintances, his secretary, libraries, radio stations, etc. all over the world in an effort to find what he needed. He was unsuccessfully treated as an outpatient and came to us for intensive, inpatient treatment. This patient’s medical history was significant. On review of his MRI, recent small basal ganglia infarcts were noted. These infarcts were estimated to have occurred prior to the onset of Mr. X’s OCD symptoms and may have etiologic significance. Teachman (Teachman, 2007) suggests that it is not clear whether existing cognitive therapy models apply to older populations due to the changes in older persons’ cognitive functioning that accompany normal aging. As a means of ruling out any cognitve deficit, we opted to administer the Dementia Rating Scale (DRS; Mattis, 1976). Our patient’s scores (DRS Total Score and scales of Attention, Construction, Initiation/ Perseveration, and Memory) fell in the normal range for elderly subjects. He did show a deficit on the Conceptualization scale due to a tendency to respond to questions in a somewhat concrete fashion. We did not believe this would have an effect on his treatment. Treatment began with psychoeducation. We provided a cognitive behavioral conceptualization of OCD and the rationale for exposure and response prevention (ERP). Obsessive intrusions and rituals were explained to the patient as a “learned pattern of reacting to certain situations or objects” and were likened to “habits” that can be broken or weakened with effort. In order to “break these habits” and learn that anxiety will decrease, even in the absence of rituals, the patient would need to confront the situations, or OCD-producing stimuli that provoke anxiety, and refrain from engaging in rituals. Through repeated exposure, anxiety decreases to a manageable level and it was expected that the patient would learn that rituals were unnecessary, in that they neither prevented nor ended his distress. ERP was introduced gradually due to both his high levels of anxiety and his difficulty understanding the rationale for treatment. He was seen for individual ERP sessions twice daily, with each session lasting 60–90 minutes. A hierarchy of exposure experiences was developed and situations were presented to the patient in a gradual fashion beginning with the lower anxiety items. In creating the hierarchy, a situation was introduced and the patient was asked to rate his subjective anxiety as low, medium, or high. He was asked to refrain from note writing for a 30-minute period each day. Once he could successfully accomplish this task, the period was lengthened. Within one week he was able to discontinue all note taking, and all of his accumulated lists, both at home and at the hospital, were discarded. He was then exposed to those situations that typically triggered his note taking, such as reading newspapers or magazines and watching television. While he could successfully abstain from taking notes, his anxiety caused him to ask questions of or seek reassurance from staff, family, and other patients. Response prevention took the form of reducing his telephone calls to elicit answers to no more than two per day, and staff members were instructed to redirect him when he attempted to solicit information from them.
Clinical Illustrations
55
Finally, the complete cessation of information-seeking phone calls and a continued ban on note taking were implemented. With the patient’s permission, his wife, coworkers, and staff on the unit were apprised of this goal and worked collaboratively to ensure his compliance with the ritual ban. Within the week, the patient was asking questions only infrequently and receiving virtually no information from the above sources. Discharge planning and relapse prevention strategies were initiated. The patient, as well as his family and coworkers, was instructed in the potential barriers to treatment maintenance and in appropriate responses to difficult or stressful situations. In addition to ERP, this gentleman also received pharmacological treatment. Over the course of his stay, his prior medications were discontinued and he was placed on Zoloft 200 mg every morning, Ativan 0.5 mg twice a day and Depakote 750 mg daily. At the outset of treatment, this patient’s YBOCS score was in the severe range (YBOCS ¼ 24). While not completely ritual-free, by the time of his discharge (day 21), his score had dropped to 19 and he had dramatically reduced the amount of time he spent ritualizing. He continued to increase his gains after leaving the hospital. At 12 weeks post treatment, his YBOCS had dropped to 2 and, while he reported experiencing mild intrusive thoughts, he was able to resist any impulse to ritualize and return to his pre-OCD level of social functioning.
Case Study 3dAnxiety in Alzheimer’s Disease Mr Jones, an 81-year-old with mild cognitive impairment due to Alzheimer’s disease, was referred for treatment of his continuing severe anxiety and worries. He complained of nearly constant dysphoric mood, a feeling of inner tension, and difficulty relaxing. On initial evaluation the patient’s score on the BDI was 23 and his GAF was 60, in part due to his cognitive limitations and in part to his psychological symptoms. His MMSE score was 22 out of 30, considered typical of relatively mild cognitive impairment in a dementing illness. The patient was aware of his surroundings, knew important people around him, remembered treating clinicians from one visit to the next, but could not say the day, date, month, or year, and if not prompted would not have taken medications regularly. Over a period of several years, he had shown very mild evidence of continuing cognitive decline and was treated with a cholinesterase inhibitor (donepezil, 10 mg) for cognitive impairment. The patient was thus cognitively and functionally stable, but had significant impairment in quality of life as a result of his severe anxiety. Pharmacologic treatments attempted included treatment with antidepressant medications, anticonvulsants, anxiolytics (benzodiazepines), and antipsychotics, all with minimal treatment effects or dose-limiting side effects. Cognitive interventions were difficult due to his anxiety-related short attention span and the patient’s uncooperativeness with activity scheduling in spite of the support of his wife of 30 years.
Case Study 4dPost-Traumatic Stress Disorder Mr W was referred by the fundraising staff of a local hospital to which he was a substantial financial contributor. A mild-mannered and self-effacing man who had retired 10 years earlier, he came for treatment because of his wife’s concerns about his agitated behavior during apparent nightmares while asleep. His wife stated that his behavior was so agitated that she feared for her safety when these episodes occurred. Mr W’s personal history was significant for having been incarcerated in a concentration camp during World War II. He was still at the camp when it was liberated at the end of the war when he was aged 13. American officers of the liberating force took care of him as he had been orphaned, and assisted his move to the U.S. to complete his education. Mr W had become successful in business and had retired after selling his business to a large corporation about 10 years before he came to my attention. While Mr W denied feeling depressed, he acknowledged multiple related symptoms including sadness, low energy, lack of interest, and sleep disturbance. Although Mr W denied knowing what occurred during the episodes of sleep disturbance, it was assumed that his nightmares were caused by post-traumatic stress disorder. He was reluctant to discuss his recollections of his time in the camp or other war-related events, and declined other treatment for specific PTSD-related symptoms. He stated that he felt that his memories were better left undisturbed. He readily engaged in treatment, however, and stated that he enjoyed the opportunity to interact with his therapist. Previous treatment by another psychiatrist had included antidepressant treatment with a serotonergic agent, a second-generation antipsychotic, and benzodiazepines. Mr W complained of feeling tired on these medications and noted that they did not relieve his disturbed sleep.
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Treatment for Mr W focused on changes in his medications and cognitive–behavioral treatment. His denial of depression while acknowledging multiple symptoms of depression is commonly encountered in work with older individuals. Little is to be accomplished in trying to persuade the client that they do, in fact, have depression. It is preferable to focus on specific symptoms such as lack of interest or hopelessness and address them as appropriate. In Mr W’s case, we focused on increasing physical activity through activity scheduling and developing better social relations with a group of friends. He developed a higher level of physical activity and greater social connectedness, and responded positively to supportive therapy.
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CHAPTER
Psychotherapy with Older Adults: The Importance of Assessment
3
Lee Hyer1, Catherine Yeager2, Renee Hyer1, Ciera Scott1 Mercer School of Medicine, Macon, GA, USA Essex County Hospital Center, Institute of Mental Health Policy, Research and Treatment, Cedar Grove, NJ, USA 1
2
Assessment is an eminent theoretical process which requires a weighting of this and a disqualifying of that across the idiosyncrasies and commonalities of methods and data sources through multiple iterations of hypothesis generation and testing. The ideal result is a “theory of the client,” a theory in which every loose end has been tied up in a logic so compelling that it seems to follow from a logic of the client’s own psyche, so convincing that one gets the feeling that things could not be otherwise. Ted Millon
Ten years ago the chapter in this book on assessment for older adults surveyed the common psychotherapy constructs and softly evaluated the then reasonable universe of outcomes as they apply to psychotherapy. In the past decade there have been several reviews on psychotherapy (e.g., Ayers, Sorrell, Thorp, & Wetherell, 2007; Wetherell, Lenze, & Stanley, 2005), a spate of studies, largely in primary care on anxiety and depression (e.g., Arean, Hegel, Vannoy, Fan, & Unutzer, 2008; Stanley et al., 2009), several cognitive training studies (e.g., Rebok et al., 2008), and a broadening of outcomes to consider, including functioning and quality of life (e.g., Scogin et al., 2005) in various treatment settings. About these and others, Gatz (2007) noted that “the older adult in mental distress can very likely be helped” (p. 52). There is then a lot to say and in this chapter we must truncate and delimit. In the past two decades there have been major changes in the psychotherapy of older adults. No longer is the stance fixed in which the therapist knows all and the client is ignorant and needs the therapist to tell him or her what to do; no longer is it the case that only techniques or manuals are helpful; no longer is it true that common factors are not important or that we have codified winners in therapy; no longer is it acceptable that measurable outcomes are unimportant; and no longer is it so that medication is superior to the psychotherapies. Our challenge in 2010 is what works in the interface of psychotherapy and medication: are additive, synergistic, or attenuation models viable? In this chapter we address the core disorders of depression, anxiety, dementia, somatic issues, and caregiving as they relate to psychotherapy for older adults. We intentionally ignore other promising areas of person change at late-life, like disruptive behavior in dementia, sleep, pain, as well as positive aging. Our focus is assessment and we will highlight measures that mark outcomes and process in therapy, both psychosocial and medical. The issue of outcome has a rich tradition in psychotherapy and, in 2010, it has taken on a renewed importance. In this chapter we consider outcomes as they are portrayed in comparative studies and ones that apply to individuals in therapy. We believe strongly that a focus on the immediate outcome alone is shortsighted and does little to inform about process changes over time. Therefore, we tier our efforts and address the total picture of Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10003-X Copyright Ó 2010 Elsevier Inc. All rights reserved.
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the older adult in psychotherapy: both the longer view of the importance of psychotherapy, and general as well as more focused outcomes. Context is requisite. Specifically, this chapter addresses assessment in psychotherapy with an emphasis on the research base and rationale for assessment. Then we consider the nuances of testing older adults from the perspective of the therapeutic relationship. We discuss psychometric issues related to older adults. We then present typical measures used in psychotherapy research and in everyday therapy. We also consider the core elements of psychotherapy, such as alliance and readiness for therapy, among others. We end with a discussion of the important role of caregivers and of attention to cultural influences; and we provide a model for thinking about older adults in psychotherapy. An illustrative case is presented as well.
RESEARCH AND PSYCHOTHERAPY Psychologists rely on scientifically and professionally derived knowledge when making scientific or professional judgments or when engaging in scholarly or professional endeavors. (APA Standard 1.06: American Psychological Association, 1992)
In medicine, the issue of care involves the best interventions/medicines for treating the disease; in psychotherapy, treatment is more complex, involving the relentless complexity of the person. Evidence-based practice (EBP) has mostly taken over from evidence-based treatments (EBTs) and is defined as “the integration of the best available research with clinical expertise in the context of client characteristics, culture and preferences” (APA, 2006, p. 273). The three pillars of EBTs include a research base, clinical expertise, and client characteristics (e.g., culture, and client’s preferences) (Institute of Medicine, 2004). The “culture wars” (Messer, 2004) surrounding this topic come honestly to the table of debate with a long past but, more precisely, a short history. In recent years there has been an explosion in the number of articles that invoke EBT or EBP. Several APA divisions have embraced EBPs to include therapeutic relationships (Norcross, 2002), clinical assessment (Hunsley, Crabb, & Mash, 2004), and principles of change (Castonguay & Beutler, 2006). Moreover, the American Psychiatric Association, especially the American Association of Geriatric Psychiatry (Lyketsos et al., 2006), has published practice guidelines in recent years on a number of psychiatric disorders and more exacting interventions. Wampold (2001), no stranger to the dialog on the efficacy of psychotherapy, highlighted, perhaps as close to a consensus as possible regarding psychotherapies for older adults: . all psychotherapies are instances of the contextual model, and therefore, all treatments should produce equivalent outcomes. That is, all bona fide treatments should possess the proper context and common factors necessary to produce beneficial outcomes.
Psychotherapy research has done this to itself. As a science, research targets internal validity of the intervention, first and foremost. In that way, we can know that any competing causes of change are ruled out. We eliminate confounds by attempting to hold all constant but the independent variable. We also include randomization, “clean” subjects, a fair placebo or alternative therapy, blinded raters, and multiple perspectives of comparison. Given these restrictions, if we find for statistical significance, we must go the next step and dismantle the intervention to learn what factor(s) could account for the difference (e.g., relaxation, extinction, parasympathetic system, attention processes, different cognitions). And, after all this, if we still have a robust therapy, we perform two more steps: (1) examine cost efficiency (is the clinical effect large enough?); and (2) does the intervention work differently on different types of clients? Finally, we must assure that the treatment is effective. In other words, does the particular intervention work in this setting? How about other settings? Clearly, validating a unique
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psychotherapeutic intervention is a long, effortful, and potentially expensive process. Nonetheless, this kind of research must be undertaken in order to demonstrate the efficacy and effectiveness of psychotherapeutic interventions (ESTs), so that psychotherapy can stand toe-to-toe with psychopharmacology in the treatment of mental health problems (Olfson & Marcus, 2009). There are changes to be considered, however. When dealing with older adults, we are often doing some application of translational research because few psychotherapy interventions have been designed expressly for elders. The translational component involves focusing on the time span of the problem, nature and scope of hypothesis, dose adjustments, and patient population characteristics. Early on in therapy with older individuals, treatment is titrated. This includes a timeframe that is short, hypotheses that are narrow in scope, small doses of the intervention, close monitoring of suicide potential, and choosing narrow treatment targets. In later phases of treatment, there is the requisite alteration in goals, which are simplified for reality’s sake. Psychotherapies are never just pure techniques to be used off-the-shelf. As this process has unfolded over the years, however, efforts to document the applicability of all-purpose psychotherapy research data appears to be relevant to older adults if practiced in an aging-informed manner (Hinrichsen, 2008). Outcomes then matter, and with older adults outcomes are complex. The issue is never just symptom abatement. Rather, therapy should aim at symptom relief and improving overall quality of life (QoL). Moreover, although evaluation questions necessarily focus on the reasons why an elder is seeking treatment, such a narrow focus is not helpful for understanding process changes over time, or other longer-term and broader concerns. In translating ESTs to older adults, and in targeting this to the most researched psychotherapy, Cognitive Behavioral Therapy (CBT), we must concentrate on more general outcomes (e.g., diagnosis), as well as specific markers associated with the identified problem. For the treatment of depression, for example, CBT will involve the alteration of cognitions to reduce depressive symptomatology. With older adults, however, the therapy also demands a scientific attitude, a skillful and flexible delivery of services, quantitative monitoring of the client’s progress, and an awareness of the personal, interpersonal, and cultural characteristics of the client, as well as QoL themes. We suggest here that, for elders, the efficacy of change also resides in the common factor details: the context of therapy. Reality constraints on outcome that cannot be easily captured by research include: the client’s readiness to change; acceptability of the treatment and preferences of the client; caregiver acceptance; availability of desired or needed services; probability of third party payer approval; tolerance of incongruous recommendations; prior treatment failures or successes; and side effects. Hence, with older adults, the big three components of therapydresearch, clinical experience, and client characteristicsdare added to by generic psychotherapy markers for adequate outcome coverage. Moreover, we believe that psychotherapy outcomes need to be multimodal and comprehensive, both at the broad and specific levels. Perhaps we may reach the point where the line between assessment and therapy becomes artificial and they meld into one. But for now, different outcomes provide very different information, even in long-term care facilities where residents with diabetes, for example, have different end points from those with physical disabilities and depression (Degenholtz, Rosen, Castle, Mittal, & Liu, 2008). We know that the basic psychometrics of any assessment scale are not an integral feature of the measurement instrument; rather it is a product of the context and population in which it was produced. In short, one can argue that all therapy and assessment is both general and local.
WHY ASSESS BASELINE FUNCTIONING AND OUTCOMES? Psychological assessment has been under siege for sometime by third party payers and others who argue that it lacks sufficient empirical support for improving diagnostic accuracy or treatment outcomes, and is no more informative than those data gleaned from the clinical interview (see Eisman
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et al., 2000; Kubiszyn et al., 2000). Psychologists themselves have complained that psychological assessment, especially neuropsychological assessment, is too complicated, time-intensive, and expensive (Piotrowski, 1999; Turchik, Karpenko, Hammers & McNamara, 2007), in spite of the fact that a well-constructed multi-method assessment can provide invaluable diagnostic and treatment planning information, as well as shorten treatment time by highlighting issues for targeted intervention (Groth-Marnat, 2003). Only recently, in response to lobbying by APA and its affiliates, have billing codes been altered to permit psychologists to be more fully remunerated for psychological assessment. Meyer et al. (1999) and Kubiszyn and colleagues (2000) present a thorough review of relevant research supporting the empirical validity and clinical utility of psychological assessment. Psychological assessment is at least as valid as most medical tests (Meyer et al., 2001). As a prelude to and follow-up after psychotherapy, psychological assessment can enhance the therapeutic process in several ways, including: 1) 2) 3) 4) 5) 6) 7) 8) 9) 10)
the delineation of clinical symptomatology; hypothesis testing and decision-making regarding differential diagnoses; assisting in case formulation; predicting a client’s ability to participate, as well as their degree of participation in psychotherapy; predicting health care utilization; hypothesis testing for therapy impasses or looming therapy failure; monitoring treatment effects over time; the confirmation (or disconfirmation) of perceived psychotherapy outcomes; improving prediction of relapse; and enabling the clinician to respond to managed care and other external pressures.
The most common method that psychologists use for clinical data collection is the unstructured interview, coupled with informal observation (Mash & Foster, 2001; Mash & Hunsley, 1993; Meyer et al., 2001). As we noted early in this chapter, humans are relentlessly complex beings, so these methods, although seemingly time-efficient, can have significant limitations. In fact, Fennig and colleagues (1994) long ago showed that diagnoses derived from clinical interviews alone agreed only about 50% of the time with diagnoses derived from multi-method assessments. In short, our reliance on using one clinician and one source of information (i.e., patient interview) to generate a diagnosis may well create an unreliable and erroneous understanding of the patient. Indeed, there are a number of shortcomings associated with unstructured, single method approaches to information gathering. First, reliance solely on the unstructured interview can mislead clinicians into overlooking potentially important areas of distress or dysfunction while focusing too much on others (e.g., the chief complaint). A second shortcoming is the clients themselves, who may be poor historians, have issues to hide from the assessor, or have personality characteristics that bias their self-presentation. Third, if the clinician’s therapy objectives are at odds with those of the client, or if the client lacks motivation for psychotherapy, the interview will almost invariably be unrevealing. Fourth, certain neuropsychiatric conditions, such as anosognosia, amnesia or confabulation, paranoia, or delusions and other subtle psychotic symptoms, interfere with the accurate reporting of information. This is especially true with regard to elders who may present with occult cognitive problems that cloud or distort the history and clinical picture. On the other hand, using a semi-structured clinical interview alone (e.g., Structured Clinical Interview for DSM-IVAxis I Disorders [SCID; First & Gibbon, 2004]), can mislead the clinician into focusing too much on the yes/no response to the question at hand and ignoring clues that point to less obvious biopsychosocial inputs to the symptom picture. Multi-method assessments, in contrast, enable the clinician to “deconstruct” the client in terms of cognitive/neuropsychological, personality, and behavioral/functional contributions to the chief complaint using standardized, quantifiable, norm-referenced tests coupled with self-report and input from significant others.
Why Assess Baseline Functioning and Outcomes?
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There is also the need, however, for care and accuracy when using multiple measures so that one does not miss the forest for the trees. In the main, tests are often sensitive but not very specific, so sound clinical judgment is vital in “reconstructing” the person from multiple sources of data. One must be especially prudent when assessing older adults because there often can be a serious disconnect between raters on target symptoms or behaviors, even when markers are quite specific. For example, when one compares depression ratings on the Geriatric Depression Scale (GDS; Yesavage, et al., 1982) for a client with cognitive decline, clients and caregivers part company on just about every item. Similarly, in dementia, caregivers almost always overrate problems while patients generally underrate them (i.e., anosognosia). Regarding functional assessments, caregivers and clients also are at odds, with the caregiver typically reporting that the client is less functional than what the client perceives to be true. In late life, constructs interact in ways that are not problematic at younger ages. For example, crosssectional investigations generally support the hypothesis that the presence and severity of anxiety in an older adult is associated with lower cognitive performance. An older adult who is anxious has a reasonable probability of having cognitive problems as well, especially in processing speed and/or executive functioning. Longitudinal studies that took into account baseline performance levels showed that clinically significant anxiety predicted accelerated cognitive decline (e.g., Sinoff & Werner, 2003). Comorbid depression and generalized anxiety also are special problems to attend to in the assessment of older adults. It now appears that there is reasonable, even probable, likelihood that the brain is involved, either subtly as in working memory dysfunction, or more globally as in an under-active prefrontal cortex and disinhibited amygdala (Beaudreau & O’Hara, 2008). As such, a thorough pretherapy assessment for the elder who presents with depression and/or anxiety is vital for understanding the full complement of issues that may be playing a role in the chief complaint. Psychological assessment also can be a rich short-term therapeutic intervention in its own right. Regardless of age, sharing test results with the client has been found to increase hope and motivation to change, increase self-awareness, decrease the sense of aloneness and isolation with one’s condition, confirm one’s self-efficacy, and enhance the therapeutic alliance (Finn & Butcher, 1991). Caregivers and family members who participate in the assessment process also benefit from testing feedback; they, too, can experience a healthier appreciation of their loved one’s strengths and weaknesses, and are empowered to meet their loved one’s needs in a more compassionate, competent, and realistic way. Finn and Tonsager (1997; 2002) describe a major goal of the “therapeutic” style of assessment as making it possible for clients to leave the assessor’s office having gained new information or experiences about themselves that will increase hope and facilitate change. This point has not escaped the personality-based (Millon & Bloom, 2008) or case-based (Persons, 2006) therapy formulations that depend on buy-in from the older patient. One also cannot discount the placebo effect here. To make the assessment process therapeutic, the assessor must not only develop an empathic connection with the client, but also create a collaborative environment in which the client (and caregiver) is encouraged to actively participate in answering the questions that brought them to the office in the first place. Testing older adults requires special sensitivity toward this cohort’s suspicion of mental health providers in general and toward the strangeness of undergoing performance and personality testing specifically (Karlin & Duffy, 2004). When used therapeutically, the tests serve to stimulate discussion about the client’s self-perceived strengths and weaknesses, as well as their response patterns to novel or problematic situations. Although the need for standard administration is respected, older adults are often confused by the assessment process, test instructions, or test items. Furthermore, elders, who may be anxious and who may feel disrespected by an “all business” professional stance, will indeed be put off by a strictly standard administration that doesn’t allow for interjections by the client or caregiver, or explanation and encouragement by the assessor. As such, nonstandard test administration is often necessary to
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draw out the client’s best performance, as well as gain an accurate understanding of the ways in which symptoms or deficits get in the way of day-to-day functioning. There are, additionally, benefits for the psychologist who uses the assessment process as a therapeutic intervention. Test results are no longer a composite of scores reflecting performance in light of age-based norms. Rather, you now know your client, and can make a difference in their experience of the world and of the self (see Hyer, Molinari, Mills, & Yeager, 2008).
PSYCHOTHERAPY MEASURES All models are wrong; some are useful. John Tukey
The criteria for change in psychotherapy have been variously defined. We have alluded to the traditional method: it evaluates the null hypothesis on therapy groups adjusted for power. In the past two decades, however, other methods have been put to use, such as that of Jacobson and Truax (1991), and Borkovec and Costello (1993), who require more change for successful end-state functioning. This latter method requires the post-treatment score to be within one standard deviation of the normalized mean on each outcome measure. This would be done pre- and post-therapy. In addition, Hamadi et al. (2007) recommend that the person show a decrease from pretest scores on at least three-quarters of standard outcome measures (e.g., Beck Depression InventorydBDI-II) to demonstrate clinically significant change, and have a remission of the DSM (American Psychiatric Association, 2000) diagnoses established at entry into therapy. Recently, a “movement” has begun that attempts to optimize the tripartite model of psychopathology: negative affect, positive affect, and physiological reaction (Mineka, Watson, & Clark, 1998). This model is tied to a dimensional approach to patient classification in lieu of the DSM system in which core components of the tripartite variables share factors across disorders. Brown, Antony, and Barlow (1995) found, for example, that patients who receive CBT for panic disorder also experience a decline in comorbidities over the course of treatment. The general trend in the past two decades of excessive comorbidities, frequent NOS diagnoses, and problems with subsyndromal domains have presented the DSM-V committees with the challenge to be more dimensional in the diagnostic and more encompassing in their approach. The tripartite model (Watson, Wiese, Vaidya, & Tellegen, 1999) explicates this process, holding that many psychiatric disorders are attached to negative affect, positive affect, and physiological reactions to varying degrees. In effect, these three dimensions can account for pathology better than diagnoses. The transdiagnostic model addresses this. Brown and Barlow (2005) held that all emotional disorders have a similar underlying structure and there is a unified approach to treating depression/ anxiety. Patients with depression and anxiety especially are served well by this model. This model holds that a single negative affective (NA) vulnerability factor influences the development of an anxiety disorder and depression. Individuals high in NA increase the likelihood of negative life events, have high levels of physical and mental health problems, are prone to multiple Axis I and Axis II disorders, and have multiple negative lifestyle habits (Lahey, 2009). NA individuals undergo multiple learning experiences that promote problems (fears and depression) that eventuate in comorbidity. Dayto-day, these individuals are excessively irritable, sad, anxious, self-consciousness, and vulnerabledout of proportion to circumstances. A good intervention protocol would therefore indicate a multimodal approach, including psychoeducation, cognitive restructuring, breathing retraining, exposure, and selfmonitoring, regardless of the presenting DSM diagnosis. Procedurally, a case-driven formulation under the umbrella of the transdiagnostic model is given to patients using parallel care strategies (not serial) and a holistic understanding of the person.
Psychotherapy Measures
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Obviously, mental disorders are not discrete events. Most psychological phenomena can be better described and understood according to a dimensional model. Older patients especially experience a high rate of comorbid symptoms. The presence of subsyndromal conditions also is robust and produces uncommonly poor outcomes for older adults (Chopra, et al., 2005). This is especially apt for the rather common presentation in late-life of depression and anxiety mixed with somatic concerns. The effort of including an Axis II presence in this taxonomy has yet to be adequately evaluated. The question also arises: What should assessment in psychotherapy really measure? Is it more theoretically oriented (e.g., CBT and attributions) or general symptom-based (e.g., functional outcomes) (Lambert & Lambert, 1999)? So, the assessment of psychotherapy outcomes is tiered, global, symptom-based, and targetspecific. In cognitive behavioral therapy (CBT), for example, evidence suggests that adjustment can be measured by quality of life (QoL) or overall adjustment scales; depression by a focused psychological measure like the BDI-II; and target-specific in the form of scales unique to cognitive change. In CBT, cognitive change is associated with changes in depressive symptomatology, for the prevention of relapse, and for quality of life. This unique therapy then requires specific assessments if it is applied. Measurement of psychotherapy outcomes must have acceptable psychometric properties. Table 3.1 presents common assessment measures used in psychotherapy. We begin with recommended measures for depression and general anxiety for older adults. Fortunately, where older adults are concerned, most of the
Table 3.1 Model Tests Applied in Clinic Settings* Depression: Recommended Instruments
Anxiety: Recommended Instruments
Initial session
HAM-D MINI MADRS BDI-II/GDS Beck Hopelessness Scale GSIS MBMD MoCA and/or RBANS Stroop Color Word Test ADCS-ADL, FAQ QoL
ADIS-IV-L MINI Penn State Worry Scale MBMD MoCA and/or RBANS Stroop Color Word Test ADCS/FAQ QoL
Each Session
BDI-II, GDS QoL
Penn State Worry Scale QoL
Discharge Session
HAM-D MADRS BDI-II/GDS MINI QoL
Penn State Worry Scale HAM-A/HARS ADIS-IV-L MINI QoL
Follow-up assessment
MINI MADRS BDI-II HAM-D
MINI HAM-A/HARS Penn State Worry Scale
Session
* Hamilton Depression Scale (HAMD), MINI International Neurospsychiatric Interview (MINI), Montgomery Asberg Depression Rating Scale (MADRS), Beck Depression Inventory-II (BDI-II), Geriatric Depression Scale (GDS), Millon Behavioral Medical Diagnostic (MBMD), Montreal Cognitive Assessment (MoCA), RBANS-Repeated Battery for the Assessment of Neurological Status (RBANS), Quality of Life (QoL), Anxiety Disorder Interview Scale-Lifetime (ADIS–L), Hamilton Anxiety Scale (HAMA), Hamilton Anxiety Rating Scale (HARS), General Suicide Index Scale (GSIS), Alzheimer’s Disease Cooperative Studies Scale– Activities of Daily Living (ADCS–ADL), Functional Assessment Questionnaire (FAQ)
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measures that apply to younger adults have applicability to them. Differences have to do with norms or with constructs that require an aging emphasis. As for the former, we do not yet have adequate norms on symptom-based measures to assert that clinical significance represents some measure of change. As for the latter, the constructs relevant to aging are many and change even as a function of young old to oldest old. The measurement and treatment of specific anxiety disorders (e.g., panic, agoraphobia, PTSD, OCD, and phobias) in older adults is not very different from that applied to younger adults. Regarding depression and generalized anxiety, however, the measures of older adults demand more consideration. While the factor structure of both constructs remains similar across ages (Blazer, 2003), there are differing cutoff points and different features unique to each. Depressed older adults, for example, have less irritability and negative cognitions, but show more sleep and health problems. In Table 3.1 we provide a listing of measures that can serve for the initial session and diagnoses, as well as markers for change. In the initial session we establish the diagnoses, its severity, and possible related problems, such as treatment issues (e.g., MBMD), suicidal thinking (GSIS), and function (IADLs). We also establish the possible existence of cognitive problems with a short battery that subserves multiple domains. Each session then can apply short forms of these scales that are sensitive to change. Monthly measures also can be applied to assure the status of the diagnosis and symptom severity. Discharge and follow-up sessions largely do the same. The hope is that the patient will be diagnosis-free and have a substantial reduction in symptom severity (Hamadi et al., 2007). Table 3.2 outlines more general and specific psychotherapy goals, as well as measures for typical depressive or anxious older patients. This table is worth paying attention to because it targets specific sub-goals and measures for change that would apply to a given case formulation. Outcomes then would be very different given general and specific goals. These have special merit to older adults. Practically speaking, effective therapy for older adults does not involve a strict interpretation of a manualized program, even if that program is empirically supported. The therapist shall not rely on one treatment approach for a given set of symptoms, but, rather, reviews the range of possible strategies and tactics and applies them to a given client. A goal attainment map can be formulated for the individual that includes potential intervention strategies, treatment targets, and ultimate outcomes. What is most important here is that for each goal there is a goal-specific assessment tool (e.g., PES for the target of increasing positive reinforcement) and goal-specific potential interventions (e.g., behavior activation) that is focused, monitored, and collaborative. Here, empirical research gives way to real world practice in the actual foxhole of the clinical situation. Whereas researchers can respond to uncertainty with abstraction and curiosity, practitioners must resolve uncertainty through action. Several omnibus measures are often applied in research related to older adults both as a screen and as an outcome measure (see Table 3.3). These relate to general functioning, psychiatric problems, QoL, health, and coping. Importantly, these measures can be summed or disaggregated and applied for general or specific purposes. These measures also provide reasonable reliability as the structure of the interview or self-report allows for feedback and checking. The cost of in-depth information is always an issue with these shorter general measures (bandwidth versus fidelity). Again, any measurement instrument is a product of the context in which it was produced, and these scales were not originally developed on older adults. Also, it is worth mentioning that these and most other measures suffer when we are interested in retrospective events related to the psychopathology. We note too that several other measures have been consistently applied to outcome studies related to older adults. These include the Montgomery-Asberg Depression Rating Scale (MADRS); the Generalized Anxiety Disorder Symptoms Scale (GADSS); Clinician Administered PTSD Scale (CAPS); Psychiatric Diagnostic Screening Questionnaire (PDSQ); and Personal Health Questionnaire (PHQ-9), among many others. Finally, we note that there are several other structured or semi-structured measures that address the DSM for Axis I diagnoses (e.g., ADIS, DIS, SADS, SCID), which have high kappa coefficients for the general population.
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Table 3.2 Psychotherapy Goals and Assessment Interventions* Depression 1. Decrease dysfunctional thinking Goal-specific assessment tools (ATQ, DAS) Goal-specific interventions (PST) 2. Improve problem solving Goal-specific assessment tools (PSI) Goal-specific interventions (PST) 3. Improve self-control skills Goal-specific assessment tools (SCQ)** Goal-specific potential interventions (PST, SCT) 4. Improve rates of positive reinforcement Goal-specific assessment tools (PES) Goal-specific potential interventions (Behavioral Activation) 5. Enhance social and interpersonal skills Goal-specific assessment tools (Inter Events Schedule) Goal-specific potential interventions (social skills training, assertiveness) Also decrease suicidal ideation, reduce stress, improve marital relationships, improve physical health, decrease relapse Generalized Anxiety Disorder (GAD) 1. Alter maladaptive metacognitions Goal-specific assessment tools (ATI, Why Worry Scale) Goal-specific interventions (Cognitive restructuring, PST, Mindfulness) 2. Decrease intolerance of uncertainty Goal-specific assessment tools (Intolerance of Uncertainty Scale) Goal-specific interventions (PST, self-monitoring, stimulus control) 3. Decrease avoidant behavior Goal-specific assessment tools (SUDS, BAT) Goal-specific potential interventions (Exposure, Behavioral experiments, Interpersonal strategies) 4. Decrease physical symptoms of anxiety Goal-specific assessment tools (Relaxation measures) Goal-specific potential interventions (Relaxation, self-control desensitization, sleep hygiene) 5. Enhance time management skills Goal-specific assessment tools (Calendar monitoring) Goal-specific potential interventions (Assertiveness) Other goals include decrease stress, increase self-efficacy, decrease need for medications )
Extrapolated from Nezu, Nezu, and Lombardo, 2004: Automatic Thought Questionnaire (ATQ), Dysfunctional Attitude Scale (DAS), Problem Solving Inventory (PSI), Problem Solving Therapy (PST), Self-Control Questionnaire (SCQ), Self-Control Therapy (SCT), Pleasant Events Schedule (PES), Anxious Thoughts Inventory (ATI), Subjective Units of Distress Scale (SUDS), Behavioral Avoidance Test (BAT) )) Self-Control Questionnaire (SCQ) is in Appendix A
Finally, we focus our attention on constructs of psychotherapy research that are directly applicable to the phenomenon of therapy. Constructs integral to psychotherapy are now more refined and operationalized with improved psychometric properties. Psychotherapy variables have blossomed beyond initial therapy notions of transference and counter-transference. They now include the working alliance, readiness for treatment, therapist allegiance and skills, common factors, therapeutic bond, patient enactment and reception, treatment fidelity, and cognitive skills, among others. Aging-related alterations involve the nuancing of these variables. To this are added other mediators of therapy such as problem complexity, readiness to change/motivation, potential to resist therapeutic intervention, social support,
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
Table 3.3 Generic Measures in Psychotherapy Outcome Studies Measure
Content
Reliability
Comment
General Health Questionnaire (GHQ) Symptom Checklist-90Revised (SCL-90-R)
60 items for severity of psychiatric symptoms 90 items for general psychopathology and subscales 58 items assessing mental health, social resources, stress, and coping 36 items for social functioning, body pain, mental health, roles, vitality, general health 32 items assessing symptoms and functional abilities Depression, anxiety, thought problems, paranoid ideas Comprehensive DSM criteria
0.8 test–retest 0.7–0.85 test– retest
15 minutes self-report; Problem is under-reporting 20 minute self-report, not disorder based
0.7–0.8 test– retest
20 minute brief screen for primary care
0.8 test–retest
10 minutes assess medical (and mental health) outcomes; Likert scale
0.7–0.8 test– retest
10 minutes with excellent use for inpatient and outpatient settings 20–30 minutes self-report; useful for OPT settings; based on DSM-IV 15–20 minutes; training necessary
Multidimensional Health Profile–Psychosocial Functioning Medical Outcomes Study 36*
Behavior and Symptom Identification Scale* Treatment Outcome Package Mini-International Neuropsychiatric Interview (MINI) Primary Care Evaluation of Mental Disorders
Matched to DSM-IV, generates specific diagnoses
0.8 test–retest
High inter-rater reliability (kappas) Inter-rater reliability is suspect
10–20 minutes; inadequate provision of accurate diagnoses
)
in Appendix A
coping styles, and patient strengths. Morey (1996) provides a taxonomy of treatment process indices for patientsdfriendliness, likeability, motivation, psychological mindedness, conscientiousness factors, selfdiscipline, impulse control, defensive style, internalization, empathy, paternal factors, and social supports. Table 3.4 provides a partial listing of variables relevant to the phenomenology of psychotherapy, broken down by therapist and client. These constructs have been in the foreground of therapy for many years. Unfortunately, the EST movement relegated them to a less relevant status until very recently. It is estimated that these variables account for approximately 30% of the variance of change in psychotherapy (Norcross, Koocher, & Hogan, 2008). This figure is not known, however, when the psychotherapy of older adults is at issue. Nonetheless, we believe their value is significant (Hyer, Kramer, & Sohnle, 2004). The following factors are also important: (1) the extent to which the therapist is age-informed and motivated; (2) the extent to which the client expects results and is positively attuned to the therapist; (3) the extent to which health literacy and compliance are addressed and supported; and (4) the extent to which the elder is willing to do off-session tasks; to these extents the chance of change is maximized, considerably more so than for younger age groups.
A MODEL OF OLDER ADULTS IN PSYCHOTHERAPY So far we have discussed the various types of measures applied in psychotherapy. What is central to this effort is the ability to form a case formulation, manage the client, and assess the outcomes. Clientfocused research (e.g., Howard, Moras, Brill, Martinovich, & Lutz, 1996; Lambert et al., 2001) aims to
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Table 3.4 Psychotherapy Constructs Related to the Therapy Session Key Client Factors Therapeutic alliance* Stages of change* Expectations Personality disorders Insight* Motivation Resistance
Key Therapist Factors Empathy Positive regard Feedback Therapeutic counter-transference
* Working Alliance Inventory (for client and therapist), University of Rhode Island Change Assessment and Clinical Insight Rating Scale are in Appendix A
predict the course of individual patients’ progress in psychotherapy (i.e., usually by decreases in symptom intensity) on the basis of their initial characteristics or on the basis of change over a brief period in therapy. In regard to the latter point, Lambert et al. (2003) demonstrated beneficial effects of simply providing feedback on patients’ progress relative to their baseline and established trajectories. There are also markers of change that focus on sudden gains, positive treatment alliance, and readiness or motivation in therapy, among others (see Hyer & Intrieri, 2006). In a multidimensional framework of case management, patient-related variables, environmental variables, the temporal dimension, and the functional dimension are core features. Nezu, Nezu, and Lombardo (2004) have developed one model, a Clinical Pathogenesis Map that outlines in a path analysis or causal modeling diagram the individual components of a patient’s problem state. The elements include distal variables, antecedent variables, organismic variables, response variables, and consequences. This is a hypothesis-testing model of care that is based on the case formulation in which the therapist and client attempt to verify (confirm or disconfirm) the model. Under this model a variety of treatment tactics and strategies can be validated. The operative word is “validated,” as this component becomes testable by selected interventions. These can include exposure, guided imagery, covert conditioning, and the like. The efficacy of any of these techniques is dependent on the unique characteristics and responses of the patient. Fortunately, there is a set number of empirically applied tactics that are used for different DSM problem states. One other therapy model, espoused by Norcross et al. (2008), is the PICO model (Patient, Intervention, Comparison, and Outcome). This model provides a throughput for dialog about the operative issues in the therapy process. Patient variables (background, abilities, desires, etc.) are matched with interventions that are chosen in a sea of options (comparison) with outcomes defined. This model provides a holistic and ongoing approach that incorporates a body of data, multiple problems, failed treatment attempts, and collaborative assessment. As we’ve argued in this chapter, assessment is important at all stages of therapy (see Table 3.1), but especially at entry. The PICO model allows for a refined formulation of the case and the necessary follow-up of intervention effects. It also provides feedback for all parties, as well as allowing for a convenient method for patient input and buy-in. Table 3.5 provides data on this model.
CAREGIVERS The term “caregiving” implies a wide range of activities from overall management of the patient, medication input, appointments, ADL/IADL negotiation, to a focus on surrogate issues of choice at the
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
Table 3.5 PICO Model of Psychotherapy P (Patient)
I (Intervention)
C (Comparison)
O (Outcome)
Ask Yourself:
Include in Your Inquiry
Assessment Choices
Who is the patient? Who is the caregiver? What is the population of interest? Specific concerns? What are you planning to do?
Patient’s primary complaint and background Collateral information Cognition/pain/sleep/ medical issues/QoL, etc.
SCID, ADIS-IV MINI RBANS/Pain scale/ESS/ Charlson Comorbidity Index
Assessment and treatment
Is there an alternative to your Rx? What is the planned outcome?
The alternative treatments, if any
Monitor change; GDS, BDI, STAI. PSWQ, Other scales (e.g., EF, sleep, pain) Comparator outcomes
Specific outcomes
Evaluate changes pre- and posttreatment
end of life. This term was barely known 30 years ago. Research over this period has shown that the care process in dementia is critical, and it is both dynamic and challenging (Aneshensel, Pearlin, Mullan, Zarit, & Whilatch, 1995; Max, Webber, & Fox, 1995; Pruchno, Kleban, Michaels, & Dempsey, 1990; Wright, Clipp, & George, 1993). Caregivers of individuals with dementia often experience high levels of stress, and it is not uncommon for them to experience depression and anxiety symptoms as well (Schultz et al., 2008; Yeager, Hyer, Hobbs, & Coyne, 2010). Percentages of common problems can reach as high as 50% for caregivers (Williamson & Schultz, 1993). In fact, in addition to burden, estimates show that 40e70% of caregivers of older adults with various medical conditions experience clinically significant depressive symptoms, with approximately one-quarter to one-half of caregivers meeting criteria for a depressive disorder (Zarit, 2006). There is reasonable evidence, too, that older caregivers, who are mostly female, and spouses with health problems are especially at risk (see Mausbach et al., 2006). Two core issues come to mind when working with an older adult with a caregiver. The first involves assessment of the caregiver regarding the identified patient. As noted, caregiving is commonly associated with depression and burden, especially when both the carer and care receiver are older adults. The usual measures related to caregiving are caregiver burden, caregiver/care receiver relationship, ADL and IADL ratings of the care receiver, and, increasingly, scales related to the care receiver’s executive functioning, such as FAQ and the DAD. In addition, depression and anxiety markers also are highly relevant for caregiver status and should be applied. Norms need to be adjusted for at least age, but also for gender and ethnicity, and perhaps for education. Perhaps local norms are best, as these can easily be developed after assessing approximately 100 cases. The second issue concerns the caregiver role and what we know as it relates to the carer’s health status and therapy with the identified patient. Recent studies demonstrate that if the caregiver is depressed, the identified patient becomes depressed and more impaired (Schulz et al., 2008). The added burden of the care receiver’s cognitive deterioration has been attributed to increased problems in caregiving over the course of a day and the degree of assistance needed for basic and complex activities of daily living (Russo & Vitaliano, 1995). In their meta-analysis, Pinquart and So¨renson (2003) found that patient behavior problems were more strongly related to caregiver burden than were patient physical and cognitive impairments, the amount of care provided, or duration of caregiving. Furthermore, Vitalino and colleagues (2009) recently showed that the caregiver who is stressed and
Testing in Different Settings
73
Table 3.6 Overall Assessment of Caregiver Idiographic Assessment––Goal Attainment Markers for the Care Receiver Core Problems BurdendZarit Caregiver Burden Interview* DepressiondCES-D, GDS, POMS AnxietydSTAI, BAI CognitiondMoCA*, Revised Memory and Behavior Checklist, reaction-response Related Constructs Social supportdPerceived Social Support Scale Caregiver healthdGeneral Health Questionnaire (GHQ) Copingdespecially avoidancedRevised Ways of Coping Scale Quality of Life Scale (WHOQOL) Cultural specificitydlanguage-specific measures Center for Epidemiological Scale–Depression (CES-D), Geriatric Depression Scale (GDS), Profile of Mood Scale (POMS), State Trait Anxiety Inventory (STAI), Beck Anxiety Inventory (BAI), Montreal Cognitive Assessment (MoCA), WHO Quality of Life (WHOQOL) * Zarit Caregiver Burden Interview and MoCA are in Appendix A
depressed is at risk for cognitive decline as well as the patient. Assessment may therefore involve more than just the usual markers of burden in caregiving. One other issue is relevant here: the lack of concordance between caregiver and care receiver is a concern for the practitioner. Estimates of the patient’s problems typically result in the caregiver’s seeing a worse situation, whereas the care receiver sees less pathology. Extant measures of selfreported patient insight appear to allow for inflated ratings of current functional status (Hyer, Yeager, Shah, Nizam & Coleman, 2007). Often, too, the caregiver can overstate problems because of the lenses of frustration and burden. So, the practitioner must be wary, obtain data from multiple sources over time, and pay attention to outcomes. Idiographic assessment is most relevant to caregiving as this allows for measurement in each individual setting. Commonly used scales are outlined in Table 3.6. Most studies assess caregiver burden, depression and anxiety, in addition to cognition (see Gallagher-Thompson & Coon, 2007). We also highlight several related constructs that have been used as outcomes for caregivers. Among caregiver studies, the issue of diversity has been an important consideration. The REACH (Resources for Enhancing Alzheimer’s Caregivers Health) project addresses this issue specifically and endorses psychoeducation, counseling and multi-component interventions as effective, but these must be tailored to the cultural mores of the carer (see Gallagher-Thompson & Coon, 2007).
TESTING IN DIFFERENT SETTINGS The treatment setting in which the assessment takes place matters. Increasingly, the variety of settings, from outpatient primary care and outpatient mental health clinic to inpatient medical treatment (including rehabilitation) or psychiatric care, as well as the continuum of older adult living settings (continuing care retirement communities, assisted living, and nursing homes), each have unique features that influence assessment. The primary variables that are associated with different settings are degree of frailty, types of medical comorbidities, and psychiatric intensity. Most important is what is emphasized in each setting, what is possible for treatment, and what are reasonable outcomes in given
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
treatment settings. Cognition is important in all, followed closely by markers of depression, anxiety, somatic problems, and adjustment (overall and functioning). We briefly address two settings here: primary care and long-term care. These are the most common venues in which mental health issues present, and in some ways are the least understood. Primary care continues to have high psychiatric comorbidities (17e37% for depression alone), which are frequently missed by primary care physicians (Miller et al., 2009). Missed psychiatric diagnoses (false negatives) can be as high as 50%, while false positives are approximately 75%. Proper diagnosis of dementia and anxiety fare no better in these settings. The integration of psychology into primary care is increasingly recommended and effective, especially when focused case management models are applied (see Arean et al., 2008). Long-term care, both nursing homes and assisted living facilities (ALFs), provides unique settings for assessment. In recent years ALFs have become more like nursing homes in prevalence rates of psychopathology, including dementia. In comparison, nursing homes have fewer numbers of long stay residents, more frail elders, and increased numbers with psychiatric problems (Hyer & Intrieri, 2006). Measures in this setting are increasingly proscribed by insurance and CMS regulations (e.g., Minimum Data Set). All residents must be evaluated by facility staff at set times during the year and these ratings tend to be relatively accurate (Hawes, Phillips, Holan, Sherman, & Hutchison, 2005). Recent reviews on cognition, depression, anxiety, adjustment, and quality of life in long-term care (see Reichman & Katz, 2008) have fostered the use of common measures with careful attention to purpose of testing and norms. Domains of sleep and pain, as well as behavior disruptions, require attention in these settings, because close to 80% of residents will have these problems (Kim & Rovner, 1996). Any evaluation must account for the unique phenomenology of the long-term care setting where activity and sleep are compromised, as well as the fit between the construct measured and requirements to do tasks in a setting where there is considerable help.
CULTURAL DIVERSITY AND ASSESSMENT The combination of emic and etic perspectives we espouse assumes that while the behaviors targeted by the intervention are exhibited across cultures, how persons understand those behaviors and how willing they are to engage in the process of therapy to change the problematic behavior may differ by cultural groups. Domenech-Rodrı´guez & Wieling, 2004
The U.S. is ever more ethnically and culturally diverse. Approximately 34% of the population is currently estimated to self-identify as non-white, and ethnic minorities are projected to comprise over 50% of the U.S. by 2050 (U.S. Census Bureau, 2004). Yet, too few EBTs/ESTs have included representative numbers of racial/ethnic minority groups in their study samples. Indeed, in an examination of 379 NIMH sponsored clinical trials, Mak and colleagues (2007) found that fewer than half provided information on the race or ethnicity of their study populations. Among those studies that provided sample demographics in sufficient detail, Caucasians and African Americans tended to be over-represented and all other U.S. racial/ethnic groups were significantly underrepresented. What is more, even among those clinical trials that had substantial sample sizes, there were too few racial/ ethnic minority participants to compare their treatment outcomes against those of the white majority. Lack of racial/ethnic diversity in the development of EBPs, as well as inattention to cultural context or social class, is also problematic. For example, of the four evidence-based individual psychotherapies for older adults identified on the National Registry of Evidence-Based Programs and Practices (CBT for Late Life Depression, IMPACT, PROSPECT, Prolonged Exposure Therapy for PTSD), study populations were predominantly white and female (see www.nrepp.samhsa.gov/index.asp).
Cultural Diversity and Assessment
75
These and other psychotherapies are designed, then, on the dominant American (white) culture; as such, the change process is conceptualized as occurring within an individual, with outcome measures focused on the individual. Contrast this with what we know about other American ethnocultural groups (e.g., African American, Hispanic/Latino) in which the change process may be better contextualized by including family and community (LaRoche & Christopher, 2008). It is notable that three cognitiveebehavioral interventions have been adapted for depressed and/or anxious Latino/Hispanic adults (Escobar et al., 2007) and Asians (Chen, et al., 2007; Hwang, et al., 2006), but there are no data on the transferability of these therapies to older adults. In sum, given the lack of attention to minority group representation in ESTs/EBTs, and EBPs, the practitioner must exercise great caution and care when drawing on ESTs/EBTs to treat racially/ethnically diverse elders. In practice, all psychotherapy problems are contextualized by culture. Cultural factors, especially ethnicity, gender, age, religious or spiritual beliefs, and education, significantly influence a person’s perception of illness. As such, individuals from different cultures will experience and manifest symptoms of mental illness differently, and psychiatric diagnoses will vary across cultures. Cultural factors also affect an elder’s decisions about treatment and compliance, as well as serve as moderators for treatment prognostics. The practitioner must therefore carefully consider a client’s cultural history, world view, education, preferences for treatment, and, of special significance to older adults, degree of acculturation, when determining how best to intervene psychotherapeutically. Acculturation, which represents the level at which values, language, and cognitive styles are shared within an ethnic community versus those of the dominant culture, is an especially potent variable when developing an assessment and treatment plan (Manley, 2006). Furthermore, differences continue to exist among ethnic groups in prevalence rates for many psychiatric disorders, as well as treatment outcomes, and in basic issues such as health utilization (Bernal & Domenech-Rodriguez, 2009). The importance of accounting for ethnocultural factors in the diagnostic assessment is emphasized in the DSM (American Psychiatric Association, 2000). Five areas are recommended for consideration, especially for concerns regarding assessment and treatment: (1) the cultural identity of the person (self-identified); (2) a cultural explanation of the individual’s disorder; (3) cultural factors related to psychosocial environment and levels of functioning; (4) cultural elements of the relationship between patient and clinician; and (5) overall assessment of diagnosis and care. Likewise, the application of a culturally informed functional analysis has been raised as an important issue for CBT. This applies to race/ethnicity, socioeconomic status/social class, and gender. Tanaka-Matsumi, Seiden, and Lam (1996) have identified eight steps in this effort: 1) 2) 3) 4) 5) 6) 7) 8)
Assess cultural identity and degree of acculturation. Assess and evaluate the presenting problems with reference to the client’s cultural norms. Evaluate the client’s causal attributions regarding their problems. Conduct a functional analysis. Compare one’s case formulation with the client’s belief system. Negotiate treatment objectives and methods with the client. Discuss with the client the need for data collection to assess treatment progress. Discuss with the client the anticipated treatment duration, course, and expected outcomes.
Measures of acculturation are available for a number of racial/ethnic groups found in the U.S. Some scales are linear; that is, they measure the extent to which an individual has assimilated into the dominant culture. More preferable are bi-linear or, even better, multidimensional scales, which measure both the degree of assimilation and degree to which an individual retains the culture of origin (see Kim, & Abreu, 2001; Zane & Mak, 2003; Zea, Asner-Self, Birman, & Buki, 2003 for reviews). A well-designed acculturation scale measures aspects of behavior, cultural identity, knowledge, language, and, most importantly, values. Zea and colleagues (2003) suggest that the first four factors
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
reflect a more superficial degree of cultural immersion, whereas values are indicative of a deeper degree of cultural identity with either the traditional or host culture. Understanding the client’s, and caregiver’s, value systems is essential for successful psychotherapy. Table 3.7 lists examples of bilinear and multidimensional scales that have a reasonable evidence base for younger adults. Data on older adults is wanting, however. Because of the dearth of data regarding the ecological validity of cognitive, personality, and neuropsychological assessment instruments for racial/ethnic minority older adults, Byrd and Manley (2005) suggest that the clinical interview might be the best way to evaluate a minority elder’s premorbid level of functioning, current functional status, and cultural norms for functional behaviors (e.g., gender expectations for ADLs, IADLs). Collateral information from the spouse, children, or siblings can be especially helpful here. We also highlight that ethnic minority groups, especially elders, score significantly lower than whites on cognitive and neuropsychological tests, so every effort must be made to use test norms that have been adjusted for age, sex, ethnicity, and education (Nell, 2000). Furthermore, Manley and colleagues (Manley et al., 1998; Manley, Jacobs, Touradji, Small, & Stern, 2002), as well as Gasquoine (2001), have pointed out that reading grade level and/or degree of bilingualism have more impact on verbal test performance than does educational attainment. Education quality also is important to consider. This is especially true in the case of African Americans who were schooled before versus after the Brown v. Board of Education decision. In a word, literacy and degree of bilingualism should be assessed prior to the administration of any tests. Additionally, bilingual clients should be given the choice of language to be used for testing. However, when the client has only limited English and the clinician does not speak the client’s native language, the use of a professional translator trained in assessment techniques or referring out must be considered. The use of untrained interpreters, such as family members or coworkers, can invalidate the assessment and should be avoided. This section underscores the necessity of a careful selection of measures when assessing racial/ ethnic minority elders. This is especially critical for cognitive evaluations. A cognitive screening measure as seemingly simple as the Mini Mental Status Exam (MMSE; Folstein, Folstein & McHugh, 1975) may not be appropriate for some ethnic minority elders. Fillenbaum, Heyman, Huber, Ganguli, and Unverzagt (2001), for example, showed that the specificity of the MMSE for detecting dementia was significantly lower for African Americans (59%) than for whites (94%). False positives may result. Fortunately, some commonly used neuropsychological tests have normative data on different minority groups gleaned from individual studies (see Mitrumshina, Boone, Razani, & D’Elia, 2005; Strauss, Sherman, & Spreen, 2006), but these data, again, must be used with caution because limitations such as small sample sizes, lack of education information, limited age range, and lack of Table 3.7 Acculturation Scales for Racial and Ethnocultural Minorities* Racial/Ethnic Group
Acculturation Scales
Any US minority group Black/African American Asian
Abbreviated Multidimensional Acculturation Scale (AMAS) African American Acculturation Scale-Revised (AAAS-R) Suinn-Lew Asian Self-Identity Acculturation Scale (SL-ASIAN) Asian Values Scale-Revised (AVS-R) Bicultural Scale for Puerto Ricans Acculturation Rating Scale for Mexican-Americans-II (ARSMA-II) Tribe-specific measures are recommended
Hispanic/Latino Native American )
AAAS-R (Klonoff & Landrine, 2000); SL-ASIAN (Suinn, Knoo, & Ahuna, 1995); AVS-R (Kim & Hong, 2004); Bicultural Scale for Puerto Ricans (Corte´z, Rogler & Malgady, 1994); ARSMA-II (Cue´llar, Arnold & Maldonado, 1995); Native American measures (see Dana, 1993, pp. 128–130); AMAS (Zea et al., 2003)
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co-normed measures are widespread (Byrd & Manley, 2005). Also, Heaton and colleagues (Heaton, Miller, Taylor, & Grant, 2004) have produced a set of age, gender, and education-corrected norms for many traditional neuropsychological tests appropriate for White and African American individuals. Finally, several groups have adapted existing or developed new neuropsychological batteries specifically for Hispanic/Latino clients. They include: the Spanish language version of the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS; Randolph, Tierney, Mohr, & Chase, 1998); Neuropsychological Screening Battery for Hispanics (NeSBHIS; Ponton et al., 1996); Bateria Neuropsychologica en Espanol (Artiola, Fortuny, Hermosillo-Romo, Heaton, & Pardee, 1999). The RBANS also has recently been adapted for Chinese clients (Zhang et al., 2008).
Case Study Mrs B is an 86-year-old white female who presents with primary pathogenic components of depression, grief, and cognitive slowness. She has been widowed for just over two years. She is living with her son but also stays with her daughter at least once a week. Mrs B is college educated. In her youth, she had married a minister whose career was in the Air Force. Her husband retired from there and started several churches where he was very popular. She was the dutiful pastor’s wife. When it became clear that they could not have children, they adopted a child and, later, a set of twins. She believes that she was an excessively permissive parent, which, she is convinced, led to drug problems for the oldest child and divorces for the twins. Mrs B feels guilty about all this. Currently, her older son, now in his 50s, is in a rehab home and the twins have taken a protective stance toward their mother as the older son has “abused” her financially over the years. Mrs B has been forlorn for a period predating her husband’s death. She expresses this by yearning after her husband, and also by being inactive, not making decisions, and manifesting cognitive confusion. Mrs B also complained of visual hallucinations. She has been dealing with these problems for at least two years. Medically she has arthritis and hypertension, as well as Parkinsonism, but she does not attend any primary care clinic. Worried, the twins brought her into the clinic for an evaluation.
Pre-treatment Assessment Table 3.8 provides information on Mrs B’s pre- and post-assessments. Her diagnoses were set initially by the MINI, as well as clinician ratings and by findings from selected cognitive tests. Her current depression recurred from an earlier period in her life when she was having problems with her children. She had always been a worrier, but recently Mrs B expressed concern about several issues: her health; being a burden to her children; and her son’s condition. She does not feel in control of her situation. Scores on the HAMD and HARS as well as the MINI indicate current depression and anxiety. Mrs B also completed several self-report measures that confirmed this. She also reported an overall lower quality of life (QoL) and trouble with sleep, but she denied having pain (to any degree). Mrs B also was mildly suicidal (GSIS [Factor I]dno operative plans). For the most part she handled day-to-day functioning well. Mrs B was found to suffer mild cognitive impairment. In brief, Mrs B’s cognitive profile was set by her score on the Oklahoma Premorbid Intelligence Estimate–Vocabulary (OPIE–V IQ) of 98, placing her in the average area intellectually. Although this has a wide confidence interval (~12 points), this is a reasonable marker with which to gauge her skills at present. Her MoCA was moderately impaired, somewhat lower than what would be suggested by her premorbid intelligence estimate. As such, the screening indicated the necessity for further neuropsychological testing. Mrs B scored an RBANS Index of 80, placing her at the 5th percentile for her age group. RBANS subscale scores were generally in the Below Average/Low Average range; Attention Index ¼ 88 (21st percentile); Visuospatial Index ¼ 89 (19th percentile); Language index ¼ 89 (23rd percentile); Immediate Memory Index ¼ 75 (7th percentile); and Delayed Memory index ¼ 78 (7th percentile). Mrs B’s performance on executive function tasks was poor. This included the Stroop, the Trail Making test, semantic fluency, and several working memory tasks on the WAIS-III. There also were mild deficits on the FAQ (see below), a measure of executive functions in relation to activities of daily living. Most concerning of these test findings were Mrs B’s memory deficit (lower by a standard deviation on recall) and her impaired executive functioning (EF). This last deficit was viewed to be sufficiently troublesome to warrant EF as a major target for treatment. Importantly, Mrs B showed that she currently possesses adequate skills to handle her day-to-day requirements. Furthermore, she is cognitively competent for all decisions, medical or otherwise. Mrs B was also given the MBMD to determine personality styles as well as treatment issues (treatment prognostics and stress moderators). Her personality registers as passive, but generally cooperative, and dependent. She is decidedly not assertive and socialization is an issue. There were treatment concerns about her functioning and
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
Table 3.8 Pre-treatment to Post-treatment Changes on Key Measures Pre-treatment Axis I: 296.30 Major Depressive Disorder, Recurrent 300.02 Generalized Anxiety Disorder 294.9 Cognitive Disorder, NOS Axis II : Deferred Axis III : CHF, arthritis, “MCI” Axis IV: Lack of resources: social support, family problem Axis V : GAF: 60 Post-treatment (2 weeks after Rx) Axis I : 296.30 Major Depressive Disorder, Recurrent (subsyndromal) 300.02 Generalized Anxiety Disorder (subsyndromal) 294.9 Cognitive Disorder, NOS Axis II : Deferred Axis III : CHF, HTN, arthritis, “MCI” Axis IV: Social support, family problem Axis V : GAF: 65 Six-Month Follow-Up (MINI interview administered) Axis I: 296.30 Major Depressive Disorder, Recurrent (subsyndromal) 300.02 Generalized Anxiety Disorder (subsyndromal) 294.9 Cognitive Disorder, NOS Axis II : Deferred Axis III : CHF, HTN, arthritis, Parkinsonism, “MCI” Axis IV: Family problem Axis V : GAF: 60 Measure
Pre-Score
Post-Score (2 wks)
80 23 15 24
88 26 42 48
Cognitive RBANS (total) MoCA Stroop Color-Word Phonemic Fluency (FAS)
(below average) (below average) (low average) (low)
(low average) (average) (average) (average)
Affective HAMD HARS BDI-II PSWS GSIS SWLS Pain Rating Sleep (ESS)
24 (high) 28 (high) 28 (high/moderate) 67 (moderate) 22 (moderate) 12 (low) 3/10 (low) 12 (high)
7 (normal) 9 (normal) 12 (minor problem) 42 (normal) 14 (normal) 27 (normal) 2/10 (low) 6 (average)
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Functional ADCS-ADL FAQ Charlson Comorbidity Index
7 (normal) 8 (problem normal) 6 (problem)
8 (normal) 9 (high normal) d
Personality and Treatment Issues MBMD: Personality styles Cooperative and Inhibited MBMD: Stress Moderators Functional deficits Illness apprehension Social isolation MBMD: Treatment Prognostics Interventional fragility Problematic compliance CHF is Congestive Heart Failure; HTN is hypertension; MCI is mild cognitive impairment; GAF is Global Aassessment of Functioning. RBANS-Repeated Battery for the Assessment of Neurological Status-Form A (RBANS); Montreal Cognitive Assessment (MoCA), Beck Depression Inventory-II (BDI-II), Letter Fluency (FAS), Penn State Worry Scale (PSWS), Hamilton Depression Scale (HAMD), Hamilton Anxiety Rating Scale HARS), General Suicide Index Scale (GSIS), Life Satisfaction (SWLS), Epworth Sleep Scale (ESS), Alzheimer’s Disease Cooperative Studies Scale-Activities of Daily Living (ADCS-ADL), Functional Assessment Questionnaire (FAQ), and Millon Behavioral Medical Diagnostic (MBMD)
Table 3.9 Therapy Sessions Session 1: Discussion of case, transdiagnostic targets, socialize to EF training Monitor moods Activity scheduling Increase PE (three of them) MD consult/Med labs (bring in physician) Session 2: EF training Monitor moods/Activity Scheduling/Increase PE Decrease avoidance Positive aging image priming Call son Emotional awareness Sleep diary: Sleep hygienedoption of meds Belly breathing Session 3: EF training Monitor moods/Activity Scheduling/Increase PE/Decrease Avoidance Positive aging image priming Worry schedule Sleep diary: Sleep hygiene Emotional awareness All interpersonal tasks (role play) Breathing Session 4: EF training Monitor moods/Increase PE/Activity Schedule/Avoidance/Worry Schedule Positive aging image priming (Continued)
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
Table 3.9 Therapy Sessions Continued
Session
Session
Session
Session
Session
Session
Session
Session
Emotional awareness Sleep monitoring and hygiene Bring in family (all interpersonal issues) Breathing 5: EF training Monitor moods/Increase PE/Decrease Avoidance/Act Schedule/Worry Schedule Improve problem solving (target family issues) Death ideation challenge (monitor GSIS) Sleep monitoring and hygiene Breathing 6: EF training Monitor moods/Increase PE/Decrease Avoidance/At Schedule/Worry Schedule Problem solving Death ideation challenge (monitor GSIS) Sleep hygiene Breathing 7: EF training Monitor moods/Increase PE/Act Schedule/Worry Schedule Problem solving Death ideation challenge (monitor GSIS) Sleep hygiene (resolved) Breathing 8: EF Training Monitor moods/Increase PE/Act Schedule/Increase PE/Worry Schedule Problem solving Breathing 9: EF training Monitor moods/Increase PE/Decrease Avoidance/Worry Schedule/Act Schedule Loss of husband (mood monitoring and ritual) MD follow-up/Sleep check-up Problem solving 10: EF training Monitor moods/Increase PE/Decrease Avoidance/Worry Scheduling Loss of husband (mood monitoring and ritual) Activity Scheduling (family for last session) Call physician Problem solving Breathing 11: EF training Monitor moods/Increase PE/Decrease Avoidance/Worry Schedule Problem solving Family issues Breathing 12: Sum up Relapse issues
Conclusion
81
Table 3.10 Stroop CW and BDI Across Sessions Therapy process measures on the Stroop Color Word trial (Stroop CW) and the Beck Depression Inventory (BDI) over 12 therapy sessions of treatment 35 Stroop CW
30
BDI
Score
25 20 15 10 5 0
1
2
3
4
5
6
7
8
9
10
11
12
Number of sessions
illness apprehension, as well as concerns about interventional fragility and problematic compliance. These descriptors are face valid, given her history, and therefore they can be folded into her treatment. She scored a 6 on the Charlson Comorbidity Index, a high predictor of further morbidity and possible mortality. There were several targets selected for therapy. These included problems related to: (1) depression, notably to increase behavioral activation and positive events, improve problem solving and emotional awareness, prime her self-image for positive self-assessment, and monitor death ideation; (2) anxiety, to teach relaxation techniques, decrease avoidance (via assertiveness training), reinforce activity scheduling as well as worry scheduling; (3) interpersonal functioningdthis would be task based, including talking to her son and daughter; (4) loss of husband, including monitoring mood and scheduling rituals, as well as restricting time devoted to grief tasks; and (5) medical behaviors, specifically to acquire labs and attend a neurology consult for Parkinson’s disease. Importantly, in every treatment session Mrs B trained on EF exercises (ACTIVE trial exercises, Stroop CW test, as well as a Memory Group). This training lasted from one-third to half all sessions.
Structure of Therapy Therapy sessions were constructed directly from the problem list. Initial sessions confirmed diagnoses and socialized Mrs B to the problem list. Collaboratively, priorities for therapy were set. In addition to EF training, these included activity scheduling (as she is excessively passive and unstructured), monitoring moods so that she would better assess her day, and psychological status, relaxation, problem solving (in middle and later sessions), and family needs, followed by health maintenance/physician issues, sleep hygiene, grief, and some interpersonal challenges. These tasks were agreed to within the context of the transdiagnostic model: Mrs B would try the tasks, monitor outcomes and change focus, if necessary. Early sessions stressed the importance of activity scheduling, her ability to control her situation, and her challenge to monitor her own psychological status. Mrs B also was primed with several positive selfidentity images. This had a very positive effect on her. Table 3.9 presents these topics. Table 3.10 provides objective data on the two key outcomes of her therapy: depression (BDI-II) and EF training (Stroop CW test).
CONCLUSION This chapter highlighted the importance of assessment in psychotherapy that now has empirical support behind the various interventions. Assessment is the sine qua non for ESTs or EBTs. However, “there are many roads to Rome.” The field of psychology and, for that matter, psychiatry, has rediscovered the value of monitoring and measuring, as they provide perspective, a course for care, and markers for
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success. In this chapter we have provided input for many levels of evaluation in the therapy process, and made suggestions as to how to foster change. Finally, we have endorsed one method, above all others, to assist in this process: the development of the case formulation using a transdiagnostic model. Ultimately, an unearthing of the biological and behavioral mechanisms that mediate psychological disturbances will be necessary for a full understanding of the origin, symptomatology, cultural context, maintenance, treatment, and course of a mental disorder. This may yet be a distant vision, but one that is ever nearer on the horizon for older adults. The commitment to using assessments in all our interventions will bring this vision closer.
APPENDIX A: SELF-CONTROL QUESTIONNAIRE Please read over read over the following statements. For each item, circle a number from 1 (very little) to 5 (very much) that best represents how much the statement applies to you in general. There are no right or wrong answers. Do not spend too much time on any statement.
Item
Very Little
A Little
Some
Much
Very Much
1. 2.
I don’t try hard enough at anything I do. I am very self-critical.
1 1
2 2
3 3
4 4
5 5
3.
When there is some goal I’d like to reach, I find it best to list specifically what I have to do to get there.
1
2
3
4
5
4. 5.
1 1
2 2
3 3
4 4
5 5
6.
When bad things happen to me, I feel responsible. A long-term benefit is more important to me than a short-term payoff. I am always noticing the positive things that happen.
1
2
3
4
5
7. 8.
I judge myself based on what others think. I don’t work hard enough.
1 1
2 2
3 3
4 4
5 5
9. 10.
I am always looking for the next bad thing to happen. Things beyond my control rule my moods.
1 1
2 2
3 3
4 4
5 5
11. 12.
When I fail, it is because of my own inadequacy. I don’t reward myself for the difficult things I’ve done.
1 1
2 2
3 3
4 4
5 5
13. 14.
Good things happen only because I get lucky. I usually succeed in what I try to do.
1 1
2 2
3 3
4 4
5 5
15. 16.
I always set specific, concrete goals for myself. I often do things I know will be bad for me in the long run.
1 1
2 2
3 3
4 4
5 5
17.
Positive things in life do not happen routinely, they are few and far between.
1
2
3
4
5
18. 19.
Other people’s approval determines how I feel about myself. I spend a lot of time thinking about my faults and failures.
1 1
2 2
3 3
4 4
5 5
20. 21.
I have a hard time dismissing the negative thoughts about myself. I reward myself for my efforts towards accomplishing a goal.
1 1
2 2
3 3
4 4
5 5
22.
Even though I know that doing something now will produce the most positive results for me in the long run, I tend not to do it.
1
2
3
4
5
23. 24.
1 1
2 2
3 3
4 4
5 5
25.
I feel unhappy about my work unless other people approve. I like to reward myself with something special, such as buying something I’ve been wanting. I notice all the little steps I’ve accomplished as I work toward a goal.
1
2
3
4
5
26. 27.
Often my goals are so distant, they seem impossible to reach. My efforts are never enough.
1 1
2 2
3 3
4 4
5 5
28.
When I think about the future, I can see many positive things.
1
2
3
4
5
APPENDIX A: Self-Control Questionnaire Item 29. 30. 31.
I usually place more weight on the long-term benefits of an action than on the immediate consequences. Even when I am doing a good job, I am not happy unless other people like my work. If I’ve done a good job, it doesn’t matter what others think.
83
Very Little
A Little
Some
Much
Very Much
1
2
3
4
5
1
2
3
4
5
1
2
3
4
5
32.
I get myself through hard jobs by rewarding myself after I complete them.
1
2
3
4
5
33. 34.
1 1
2 2
3 3
4 4
5 5
1
2
3
4
5
36.
I am good at setting goals for myself. When I accomplish something, I reward myself with a pleasant activity. If I make a mistake, I judge myself more harshly than anyone else would. I can make myself feel better by thinking about something positive.
1
2
3
4
5
37. 38.
I am often hard on myself for no apparent reason. When things go wrong, it is usually because of something I did.
1 1
2 2
3 3
4 4
5 5
39. 40.
When I do something good, I give myself credit for a job well done. There are things I can do to control my mood.
1 1
2 2
3 3
4 4
5 5
41. 42.
I reward myself for the little steps I take toward my goal. I reward myself if I do a difficult or unpleasant task.
1 1
2 2
3 3
4 4
5 5
43. 44.
I tend to set realistic goals. When I do something well, I know I can make it happen again.
1 1
2 2
3 3
4 4
5 5
45. 46.
1 1
2 2
3 3
4 4
5 5
47.
If I don’t immediately gain from my effort, I’d rather not do it at all. I don’t feel good about something I’ve done, unless someone else approves of it. Often my goals are vague.
1
2
3
4
5
48.
I always seem to remember the bad things that are upsetting me.
1
2
3
4
5
35.
SCQD Scoring 1, 2, 4, 7e13, 16e20, 22, 23, 26, 27, 30, 35, 37, 38, 45e48 are REVERSE-CODED. Scores for these items are (6-circled number). Sum up scores for 48 items to obtain total score (range: 48e240). Items load onto seven general domains as listed below. Factor/Category
# of items
Item #s
Monitoring and control of mood Future orientation
8 6
6,9,10,19,20,36,40,48 5,16,22,28,29,45
Attributional style For positive events
7 4
13,14,17,44
3
4,11,38
Internal standards Goal setting
6 7
7,18,23,30,31,46 3,15,25,26,33,43,47
Self-reinforcment Self-punishment
8 6
12,21,24,32,34,39,41,42
3 3
1,8,27 2,35,37
For negative events
Criticism of effort Criticism of self Total
48
The Self-Control Questionnaire is a measure that was originally devised to assess self-management behavior that creators of the measure believe to be possible factors involved with depression. This assessment measures the impact of various self-control behaviors and attitudes on a person’s overall ability to live productively.
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
SHORT FORM HEALTH SURVEY (SF-36) 1. In general, would you say your health is: , 1. Excellent , 2. Very good , 3. Good , 4. Fair , 5. Poor 2. Compared with ONE YEAR AGO, how would you rate your health in general NOW? , 1. MUCH BETTER than one year ago. , 2. Somewhat BETTER now than one year ago. , 3. About the SAME as one year ago. , 4. Somewhat WORSE now than one year ago. , 5. MUCH WORSE now than one year ago. 3. The following items are about activities you might do during a typical day. Does your health now limit you in these activities? If so, how much? Activities a) Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports? b) Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf?
, 1. Yes, limited a lot
, 2. Yes, limited a little
, 3. No, not limited at all
, 1. Yes, limited a lot
, 2. Yes, limited a little
, 3. No, not limited at all
c) Lifting or carrying groceries? d) Climbing several flights of stairs?
, 1. Yes, limited a lot , 1. Yes, limited a lot
, 2. Yes, limited a little , 2. Yes, limited a little
, 3. No, not limited at all , 3. No, not limited at all
e) Climbing one flight of stairs? f) Bending, kneeling or stooping?
, 1. Yes, limited a lot , 1. Yes, limited a lot
, 2. Yes, limited a little , 2. Yes, limited a little
, 3. No, not limited at all , 3. No, not limited at all
g) Walking more than a mile? h) Walking several blocks?
, 1. Yes, limited a lot , 1. Yes, limited a lot
, 2. Yes, limited a little , 2. Yes, limited a little
, 3. No, not limited at all , 3. No, not limited at all
i) Walking one block? j) Bathing or dressing yourself?
, 1. Yes, limited a lot , 1. Yes, limited a lot
, 2. Yes, limited a little , 2. Yes, limited a little
, 3. No, not limited at all , 3. No, not limited at all
4. During the past four weeks, have you had any of the following problems with your work or other regular activities as a result of your physical health? Yes
No
a) Cut down on the amount of time you spent on work or other activities? b) Accomplished less than you would like?
, 1. yes , 1. yes
, 2. No , 2. No
c) Were limited in the kind of work or other activities? d) Had difficulty performing the work or other activities (for example it took extra effort)?
, 1. yes , 1. yes
, 2. No , 2. No
5. During the past four weeks, have you had any of the following problems with your work or other regular daily activities as a result of any emotional problems (such as feeling depressed or anxious)? Yes
No
a) Cut down on the amount of time you spent on work or other activities? b) Accomplished less than you would like?
, 1. yes , 1. yes
, 2. No , 2. No
c) Didn’t do work or other activities as carefully as usual?
, 1. yes
, 2. No
6. During the past four weeks, to what extent has your physical health, or emotional problems, interfered with your normal social activities with family, friends, neighbors, or groups? , 1. Not at all , 2. Slightly , 3. Moderately , 4. Quite a bit , 5. Extremely
Short Form Health Survey (SF-36)
85
7. How much bodily pain have you had during the past four weeks? , 1. None , 2. Very mild , 3. Mild , 4. Moderate , 5. Severe , 6. Very severe 8. During the past four weeks, how much did pain interfere with your normal work (including both work outside the home and housework)? , 1. Not at all , 2. A little bit , 3. Moderately , 4. Quite a bit , 5. Extremely 9. These questions are about how you feel and how things have been with you during the past four weeks. For each question, please give the one answer that comes closest to the way you have been feeling. How much of the time during the past four weeks . 1. All of the time
2. Most of the time
3. A good bit of the time
4. Some of the time
5. A little of the time
6. None of the time
, 1. All of the time , 1. All of the time , 1. All of the time
, 2. Most of the time , 2. Most of the time , 2. Most of the time
, 3. A good bit of the time , 3. A good bit of the time , 3. A good bit of the time
, 4. Some of the time , 4. Some of the time , 4. Some of the time
, 5. A little of the time , 5. A little of the time , 5. A little of the time
, 6. None of the time , 6. None of the time , 6. None of the time
, 1. All of the time , 1. All of the time , 1. All of the time , 1. All of the time
, 2. Most of the time , 2. Most of the time , 2. Most of the time , 2. Most of the time
, 3. A good bit of the time , 3. A good bit of the time , 3. A good bit of the time , 3. A good bit of the time
, 4. Some of the time , 4. Some of the time , 4. Some of the time , 4. Some of the time
, 5. A little of the time , 5. A little of the time , 5. A little of the time , 5. A little of the time
, 6. None of the time , 6. None of the time , 6. None of the time , 6. None of the time
h) Have you been a happy person?
, 1. All of the time
, 2. Most of the time
, 3. A good bit of the time
, 4. Some of the time
, 5. A little of the time
, 6. None of the time
i) Did you feel tired?
, 1. All of the time
, 2. Most of the time
, 3. A good bit of the time
, 4. Some of the time
, 5. A little of the time
, 6. None of the time
a) Did you feel full of pep? b) Have you been a very nervous person? c) Have you felt so down in the dumps that nothing could cheer you up? d) Have you felt calm and peaceful? e) Did you have a lot of energy? f ) Have you felt downhearted and blue? g) Do you feel worn out?
10. During the past four weeks, how much of the time has your physical health, or emotional problems, interfered with your social activities (like visiting with friends, relatives, etc.)? , 1. All of the time , 2. Most of the time. , 3. Some of the time , 4. A little of the time. , 5. None of the time. 11. How TRUE or FALSE is each of the following statements for you? 1. Definitely true
2. Mostly true
3. Don’t know
4. Mostly false
5. Definitely false
a) I seem to get sick a little easier than other people.
, 1. Definitely true
, 2. Mostly true
, 3. Don’t know
, 4. Mostly false
, 5. Definitely false
b) I am as healthy as anybody I know.
, 1. Definitely true
, 2. Mostly true
, 3. Don’t know
, 4. Mostly false
, 5. Definitely false
c) I expect my health to get worse. d) My health is excellent.
, 1. Definitely true , 1. Definitely true
, 2. Mostly true , 2. Mostly true
, 3. Don’t know , 3. Don’t know
, 4. Mostly false , 4. Mostly false
, 5. Definitely false , 5. Definitely false
The Short Form Health Survey (SF-36) is a measure that consists of 36 general questions that assess the overall quality of life for a patient. This measure is widely used by medical organizations and managed care groups worldwide to better understand the overall health of a patient.
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CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
UNIVERSITY OF RHODE ISLAND CHANGE ASSESSMENT This questionnaire is to help us improve services. Each statement describes how a person might feel when starting therapy or approaching problems in their lives. Please indicate the extent to which you tend to agree or disagree with each statement. In each case, make your choice in terms of how you feel right now, not what you have felt in the past or would like to feel. “Here” refers to the place of treatment or the program. There are FIVE possible responses to each of the items in the questionnaire: 1 ¼ Strongly Disagree 2 ¼ Disagree 3 ¼ Undecided 4 ¼ Agree 5 ¼ Strongly Agree [for self-evaluation only] 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. 17. 18. 19. 20. 21. 22. 23. 24. 25. 26. 27. 28. 29. 30. 31. 32.
As far as I’m concerned, I don’t have any problems that need changing. I think I might be ready for some self-improvement. I am doing something about the problems that had been bothering me. It might be worthwhile to work on my problem. I’m not the problem one. It doesn’t make much sense for me to be here. It worries me that I might slip back on a problem I have already changed, so I am here to seek help. I am finally doing some work on my problem. I’ve been thinking that I might want to change something about myself. I have been successful in working on my problem but I’m not sure I can keep up the effort on my own. At times my problem is difficult, but I’m working on it. Being here is pretty much a waste of time for me because the problem doesn’t have to do with me. I’m hoping that this place will help me to better understand myself. I guess I have faults, but there’s nothing that I really need to change. I am really working hard to change. I have a problem and I really think I should work at it. I’m not following through with what I had already changed as well as I had hoped, and I’m here to prevent a relapse of the problem. Even though I’m not always successful in changing, I am at least working on my problem. I thought once I had resolved my problem I would be free of it, but sometimes I still find myself struggling with it. I wish I had more ideas on how to solve the problem. I have started working on my problems but I would like help. Maybe this place will be able to help me. I may need a boost right now to help me maintain the changes I’ve already made. I may be part of the problem, but I don’t really think I am. I hope that someone here will have some good advice for me. Anyone can talk about changing; I’m actually doing something about it. All this talk about psychology is boring. Why can’t people just forget about their problems? I’m here to prevent myself from having a relapse of my problem. It is frustrating, but I feel I might be having a recurrence of a problem I thought I had resolved. I have worries but so does the next guy. Why spend time thinking about them? I am actively working on my problem. I would rather cope with my faults than try to change them. After all I had done to try to change my problem, every now and again it comes back to haunt me.
The University of Rhode Island Change Assessment is utilized to measure how a patient views their own progress during therapy. This assessment is a 32-item scale that includes a total of four subscales that measure the four stages of change: precontemplation, contemplation, action, and maintenance.
BASIS-32 (Behavior and Symptom Identification Scale)
87
CLINICAL INSIGHT RATING SCALE Following interviews with patient and primary caregiver and comparing their responses, each of the following four items are assessed on a scale of 0e2: 0 [ Good insight 1 [ Relatively impaired insight 2 [ Poor insight Degree of patient’s awareness regarding the following aspects: ____1) the reason for the visit to see doctor ____2) his or her cognitive deficits ____3) his or her functional deficits ____4) his or her perception of the progression of the disease _____TOTAL SCORE (0 ¼ insight fully preserved to 8 ¼ insight totally absent) Interpretation of total CIR scores: 0 and 1 are associated with good insight 2 to 4 associated with relativity impaired insight 4 or higher associated with poor insight Assessors rating of insight: _________Strong evidence of memory problem and insight _________Mild evidence of memory problem and insight _________No evidence of memory problem and insight The Clinical Insight Rating Scale serves as a measure of patient insight pertaining to their main problem and perceived progress with improving their problem.
BASIS-32 (BEHAVIOR AND SYMPTOM IDENTIFICATION SCALE) Instructions to Respondent: Below is a list of problems and areas of life functioning in which some people experience difficulties. Using the scale below, fill in the box with the answer that best describes how much difficulty you have been having in each area DURING THE PAST WEEK. 0 [ No Difficulty 1 [ A Little Difficulty 2 [ Moderate Difficulty 3 [ Quite A Bit of Difficulty 4 [ Extreme Difficulty Please answer each item. Do not leave any blank. If there is an area that you consider to be inapplicable, indicate that it is 0¼No Difficulty. IN THE PAST WEEK, how much difficulty have you been having in the area of: 1. Managing day-to-day life (For example, getting places on time, handling money, making everyday decisions). 2. Household responsibilities (For example, shopping, cooking, laundry, cleaning, other chores).
1, 2,
3. Work (For example, completing tasks, performance level, finding/keeping a job)... 4. School (For example, academic performance, completing assignments, attendance).
3, 4,
5. Leisure time or recreational activities. 6. Adjusting to major life stresses (For example, separation, divorce, moving, new job, new school, a death)
5, 6,
7. Relationships with family members. 8. Getting along with people outside of the family.
7, 8,
9. Isolation or feelings of loneliness. 10. Being able to feel close to others.
9, 10 ,
11. Being realistic about yourself or others. 12. Recognizing and expressing emotions appropriately.
11 , 12 ,
13. Developing independence, autonomy. 14. Goals or direction in life.
13 , 14 ,
88
CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
15. Lack of self-confidence, feeling bad about yourself.
15 ,
16. Apathy, lack of interest in things. 17. Depression, hopelessness.
16 , 17 ,
18. Suicidal feelings or behavior. 19. Physical symptoms (For example, headaches, aches and pains, sleep disturbance, stomach aches, dizziness)
18 , 19 ,
20. Fear, anxiety, or panic. 21. Confusion, concentration, memory.
20 , 21 ,
22. Disturbing or unreal thoughts or beliefs. 23. Hearing voices, seeing things.
22 , 23 ,
24. Manic, bizarre behavior. 25. Mood swings, unstable moods.
24 , 25 ,
26. Uncontrollable, compulsive behavior (For example, eating disorder, hand-washing, hurting yourself) 27. Sexual activity or preoccupation.
26 , 27 ,
28. Drinking alcoholic beverages. 29. Taking illegal drugs, misusing drugs.
28 , 29 ,
30. Controlling temper, outbursts of anger, violence. 31. Impulsive, illegal, or reckless behavior.
30 , 31 ,
32. Feeling satisfaction with your life.
32 ,
The BASIS-32 measures the change in self-reported symptoms and problem difficulty over the course of treatment. This measure is supported with strong reliability and validity concerning how patients feel before and after receiving treatment.
WORKING ALLIANCE INVENTORY Form C (Client) Instructions On the following pages there are sentences that describe some of the different ways a person might think or feel about his or her therapist (counselor). As you read the sentences mentally insert the name of your therapist (counselor) in place of _____________ in the text. Below each statement there is a seven point scale: 1
2
3
4
5
6
7
Never
Rarely
Occasionally
Sometimes
Often
Very Often
Always
If the statement describes the way you always feel (or think) circle the number 7; if it never applies to you circle the number 1. Use the numbers in between to describe the variations between these extremes. This questionnaire is CONFIDENTIAL. Neither your therapist nor the agency will see your answers. Work fast, your first impressions are the ones we would like to see. (PLEASE DON’T FORGET TO RESPOND TO EVERY ITEM.) Thank you for your cooperation. 1. I feel comfortable with _________________. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
Rarely
Occasionally
2. __________ and I agree about the things I will need to do in therapy to help improve my situation. 1 2 3 4 5 6
7
Never
Rarely
Sometimes
Often
Very Often
Always
3. I am worried about the outcome of these sessions. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
Rarely
Occasionally
Occasionally
89
Working Alliance Inventory 4. What I am doing in therapy gives me new ways of looking at my problem. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5. ___________________ and I understand each other. 1 Never
2 Rarely
3 Occasionally
6. _________________ perceives accurately what my goals are. 1 Never
2 Rarely
3 Occasionally
7. I find what I am doing in therapy confusing. 1 Never
2 Rarely
3 Occasionally
8. I believe ______________ likes me. 1 Never
2 Rarely
3 Occasionally
9. I wish ________________ and I could clarify the purpose of our sessions. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
10. I disagree with _____________ about what I ought to get out of therapy. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
11. I believe the time ______________ and I spend together is not spent efficiently. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
12. ________________ does not understand what I am trying to accomplish in therapy. 1 Never
2 Rarely
4 Sometimes
5 Often
6 Very Often
7 Always
13. I am clear on what my responsibilities are in therapy. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
14. The goals of these sessions are important for me. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
15. I find what _________________ and I are doing in therapy is unrelated to my concerns. 1 2 3 4 5
6
7
Never
Very Often
Always
16. I feel that the things I do in therapy will help me to accomplish the changes that I want. 1 2 3 4 5
6
7
Never
Often
Very Often
Always
17. I believe _____________ is genuinely concerned for my welfare. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
18. I am clear as to what _______________ wants me to do in these sessions. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
Rarely
Rarely
Rarely
Rarely
Rarely
Rarely
3 Occasionally
Occasionally
Occasionally
Occasionally
Occasionally
Occasionally
Occasionally
Sometimes
Sometimes
Sometimes
Sometimes
Often
90
CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
19. _________________ and I respect each other. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
20. I feel that ______________ is not totally honest about his/her feelings towards me. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
28. My relationship with ________________ is very important to me. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
29. I have the feeling that if I say or do the wrong things, _________ will stop working with me. 1 2 3 4 5
6
7
Never
Often
Very Often
Always
30. ________________ and I collaborate on setting goals for my therapy. 1 2 3 4
5
6
7
Never
Sometimes
Often
Very Often
Always
31. I am frustrated by the things I am doing in therapy. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
21. I am confident in ______________’s ability to help me. 1 Never
2 Rarely
3 Occasionally
22. ______________ and I are working towards mutually agreed upon goals. 1 Never
2 Rarely
3 Occasionally
23. I feel that ______________ appreciates me. 1 Never
2 Rarely
3 Occasionally
24. We agree on what is important for me to work on. 1 Never
2 Rarely
3 Occasionally
25. As a result of these sessions I am clearer as to how I might be able to change. 1 Never
2 Rarely
3 Occasionally
26. _________________ and I trust one another. 1 Never
2 Rarely
3 Occasionally
27. _________________ and I have different ideas on what my problems are. 1 Never
2 Rarely
Rarely
Rarely
Rarely
Rarely
3 Occasionally
Occasionally
Occasionally
Occasionally
Occasionally
4 Sometimes
Sometimes
Sometimes
32. We have established a good understanding of the kind of changes that would be good for me. 1 2 3 4 5 6
7
Never
Very Often
Always
33. The things that _____________________ is asking me to do don’t make sense. 1 2 3 4 5
6
7
Never
Very Often
Always
Rarely
Rarely
Occasionally
Occasionally
Sometimes
Sometimes
Often
Often
91
Working Alliance Inventory 34. I don’t know what to expect as the result of my therapy. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
6 Very Often
7 Always
35. I believe the way we are working with my problem is correct. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
36. I feel ______________cares about me even when I do things that he/she does not approve of. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
Form T (Therapist) Instructions On the following pages there are sentences that describe some of the different ways a person might think or feel about his or her client. As you read the sentences mentally insert the name of your client in place of _____________ in the text. Below each statement there is a seven point scale: 1
2
3
4
5
6
7
Never
Rarely
Occasionally
Sometimes
Often
Very Often
Always
If the statement describes the way you always feel (or think) circle the number 7; if it never applies to you circle the number 1. Use the numbers in between to describe the variations between these extremes. This questionnaire is CONFIDENTIAL. Neither your client nor the agency will see your answers. Work fast, your first impressions are the ones we would like to see. (PLEASE DON’T FORGET TO RESPOND TO EVERY ITEM.) Thank you for your cooperation. 1. I feel uncomfortable with _______________. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
2. _________________ and I agree about the steps to be taken to improve his/her situation. 1 2 3 4 5
6
7
Never
Very Often
Always
Rarely
Rarely
Occasionally
Occasionally
Sometimes
Often
3. I have some concerns about the outcome of these sessions. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
4. My client and I both feel confident about the usefulness of our current activity in therapy. 1 2 3 4 5
6
7
Never
Very Often
Always
Rarely
Rarely
Occasionally
Occasionally
Sometimes
Sometimes
Often
5. I feel I really understand _________________. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
Rarely
Occasionally
6. __________________ and I have a common perception of her/his goals. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
Rarely
Occasionally
Sometimes
7. ____________ finds what we are doing in therapy confusing. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
Rarely
Occasionally
Sometimes
92
CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
8. I believe ____________ likes me. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
6 Very Often
7 Always
9. I sense a need to clarify the purpose of our session(s) for _______________. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
10. I have some disagreements with ____________________ about the goals of these sessions. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
11. I believe the time ___________ and I are spending together is not spent efficiently. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
12. I have doubts about what we are trying to accomplish in therapy. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
13. I am clear and explicit about what ______________’s responsibilities are in therapy. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
14. The current goals of these sessions are important for ______________. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
15. I find what ____________ and I are doing in therapy is unrelated to her/his current concerns. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
16. I feel confident that the things we do in therapy will help __________ to accomplish the changes that he/she desires. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
17. I am genuinely concerned for ________________’s welfare. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
Rarely
Occasionally
Sometimes
18. I am clear as to what I expect _____________ to do in these sessions. 1 2 3 4
5
6
7
Never
Sometimes
Often
Very Often
Always
19. ________________ and I respect each other. 1 2 3
4
5
6
7
Never
Sometimes
Often
Very Often
Always
Rarely
Rarely
Occasionally
Occasionally
20. I feel that I am not totally honest about my feelings toward _________________. 1 2 3 4 5
6
7
Never
Very Often
Always
Rarely
Occasionally
Sometimes
Often
21. I am confident in my ability to help ___________________. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
Rarely
Occasionally
Sometimes
22. We are working towards mutually agreed upon goals. 1 2 3 4
5
6
7
Never
Often
Very Often
Always
Rarely
Occasionally
Sometimes
Working Alliance Inventory 23. I appreciate _______________ as a person. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
24. We agree on what is important for ________________ to work on. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
25. As a result of these sessions ____________ is clearer as to how she/he might be able to change. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
26. _____________ and I have built a mutual trust. 1 Never
2 Rarely
3 Occasionally
27. _______________ and I have different ideas on what his/her real problems are. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
28. Our relationship is important to ___________________. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
29. ________________ has some fears that if she/he says or does the wrong things, I will stop working with him/her. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
5 Often
6 Very Often
7 Always
30. __________________ and I have collaborated in setting goals for these session(s). 1 Never
2 Rarely
3 Occasionally
4 Sometimes
31. _______________ is frustrated by what I am asking her/him to do in therapy. 1 Never
2 Rarely
3 Occasionally
4 Sometimes
32. We have established a good understanding between us of the kind of changes that would be good for _________________. 1 2 3 4 5 6 7 Never
Rarely
Very Often
Always
33. The things that we are doing in therapy don’t make much sense to _______________. 1 2 3 4 5
6
7
Never
Very Often
Always
34. ___________________ doesn’t know what to expect as the result of therapy. 1 2 3 4 5
6
7
Never
Very Often
Always
35. ______________ believes the way we are working with her/his problem is correct. 1 2 3 4 5
6
7
Never
Very Often
Always
36. I respect ___________________ even when he/she does things that I do not approve of. 1 2 3 4 5
6
7
Never
Very Often
Always
Rarely
Rarely
Rarely
Rarely
Occasionally
Occasionally
Occasionally
Occasionally
Occasionally
Sometimes
Sometimes
Sometimes
Sometimes
Sometimes
Often
Often
Often
Often
Often
93
94
CHAPTER 3 Psychotherapy with Older Adults: The Importance of Assessment
For Caregivers The Zarit Burden Interview Caregiver Name: ___________________________ Date: ____________________ Relationship to Patient: ______________________ Instructions for caregiver: The questions below reflect how persons sometimes feel when they are taking care of another person. There are no right or wrong answers. Just circle the response that best describes how you feel. Never Do you feel that this person asks for more help than he/she needs? Do you feel that because of the time you spend with this person that you don’t have enough time for yourself? Do you feel stressed between caring for this person and trying to meet other responsibilities for your family or work? Do you feel embarrassed over this person’s behavior? Do you feel angry when you are around this person? Do you feel that this person currently affects your relationships with other family members or friends in a negative way? Are you afraid what the future holds for this person? Do you feel this person is dependent on you? Do you feel strained when you are around this person? Do you feel your health has suffered because of your involvement with this person? Do you feel that you don’t have as much privacy as you would like because of this person? Do you feel that your social life has suffered because you are caring for this person? Do you feel uncomfortable about having friends over because of this person? Do you feel that this person seems to expect you to take care of him/ her as if you were the only one he/she could depend on? Do you feel that you don’t have enough money to take care of this person in addition to the rest of your expenses? Do you feel that you will be unable to take care of this person much longer? Do you feel you have lost control of your life since this person’s illness? Do you wish you could leave the care of this person to someone else? Do you feel uncertain about what to do about this person? Do you feel you should be doing more for this person? Do you feel you could do a better job in caring for this person? Overall, how burdened do you feel in caring for this person?
Rarely
Sometimes
Quite frequently
Nearly always
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Russo, J., & Vitaliano, P. P. (1995). Life events as correlates of burden in spouse caregivers of persons with Alzheimer’s disease. Experimental Aging Research, 21(3), 273e294. Schulz, R., McGinnis, K. A., Zhang, S., Martire, L. M., Hebert, R. S., Beach, S. R., et al. (2008). Dementia patient suffering and caregiver depression. Alzheimer’s Disease and Associated Disorders, 22(2), 170e176. Scogin, F., Morthland, M., Kaufman, A., Burgio, L., Chaplin, W., & Kong, G. (2007). Improving quality of life in diverse rural older adults: A randomized trial of a psychological treatment. Psychology and Aging, 22, 657e665. Sinoff, G., & Werner, P. (2003). Anxiety disorder and accompanying subjective memory loss in the elderly as a predictor of future cognitive decline. International Journal of Geriatric Psychiatry, 18(10), 951e959. Stanley, M. A., Wilson, N. L., Novy, D. M., Rhoades, H. M., Wagener, H. M., Greisinger, A. J., et al. (2009). Cognitive behavior therapy for generalized anxiety disorder among older adults in primary care: A randomized clinical trial. The Journal of the American Medical Association, 301(14), 1460e1467. Strauss, E., Sherman, E., & Spreen, O. (2006). A compendium of neuropsychological tests: Administration, norms, and commentary (3rd ed.). New York, NY: Oxford University Press. Suinn, R. M., Khoo, G., & Ahuna, C. (1995). The Suinn-Lew Asian Self-Identity Acculturation Scale: Crosscultural information. Journal of Multicultural Counseling and Development, 23, 139e148. Tanaka-Matsumi, J., Seiden, D. Y., & Lam, K. N. (1996). The Culturally Informed Functional Assessment (CIFA) Interview: A strategy for cross-cultural behavioral practice. Cognitive and Behavioral Practice, 3(2), 215e233. Turchik, J. A., Karpenko, V., Hammers, D., & McNamara, J. R. (2007). Practical and ethical assessment issues in rural, impoverished, and managed care settings. Professional Psychology: Research and Practice, 38(2), 158e168. U.S. Census Bureau News. (2004). Census Bureau projects tripling of Hispanic and Asian populations in 50 years: Non-Hispanic whites may drop to half total population. Retrieved August 2009 from http://www. census.gov/press-release/www/releases/archives/population.001720.html Vitaliano, P. P., Zhang, J., Young, H. M., Caswell, L. W., Scanlan, J. M., & Echeverria, D. (2009). Depressed mood mediates decline in cognitive processing speed in caregivers. The Gerontologist, 49(1), 12e22. Wampold, B. E. (2001). Great psychotherapy debate: Models, methods, and findings. Oxford, United Kingdom: Taylor & Francis, Inc. Watson, D., Wiese, D., Vaidya, J., & Tellegen, A. (1999). The two general activation systems of affect: Structural findings, evolutionary considerations, and psychobiological evidence: The structure of emotion. Journal of Personality and Social Psychology, 76(5), 820e838. Wetherell, J. L., Lenze, E. J., & Stanley, M. A. (2005). Evidence-based treatment of geriatric anxiety disorders. The Psychiatric Clinics of North America, 28(4), 871e896. Williamson, G. M., & Schulz, R. (1993). Coping with specific stressors in Alzheimer’s disease caregiving. The Gerontologist, 33(6), 747e755. Wright, L., Clipp, E., & George, L. (1993). Medical consequences of caregiving. Medicine, Exercise, Nutrition, and Health, 2, 181e195. Yeager, C. A., Hyer, L. A., Hobbs, B., & Coyne, A. (2010). Alzheimer’s disease and vascular dementia: The complex relationship between diagnosis and caregiver burden. Issues in Mental Health Nursing, 31, 1e8. Yesavage, J. A., Brink, T. L., Rose, T. L., Lum, O., Huang, V., Adey, M., et al. (1982). Development and validation of a geriatric depression screening scale: A preliminary report. Journal of Psychiatric Research, 17 (1), 37e49. Zane, N., & Mak, W. (2003). Major approaches to the measurement of acculturation among ethnic minority populations: A content analysis and an alternative empirical strategy. In K. M. Chun, O. P. Balls Organista, & G. Marin (Eds.), Acculturation: Advances in theory, measurement, and applied research (pp. 39e60). Washington, DC: American Psychological Association. Zarit, S. (2006). The history of caregiving in dementia. In S. Lobo-Prabhu, V. Molinari, & J. Lomax (Eds.), Supporting the caregiver in dementia: A guide for health care professionals (pp. 3e22). Baltimore, MD: Johns Hopkins University Press.
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Zea, M. C., Asner-Self, K. K., Birman, D., & Buki, L. P. (2003). The Abbreviated Multidimentional Acculturation Scale: Empirical validation with two Latino/Latina samples. Cultural Diversity and Ethnic Minority Psychology, 9, 107e112. Zhang, B. H., Tan, Y. L., Zhang, W. F., Wang, Z. R., Yang, G. G., et al. (2008). Repeatable battery for the assessment of neuropsychological status as a screening test in Chinese: reliability and validity. Chinese Mental Health Journal, 22, 865e869.
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Assessment of Personality Disorders in Older Adults
4 Thomas F. Oltmanns1, Steve Balsis2
1 2
Department of Psychology, Washington University in St. Louis, St. Louis, MO, USA, Department of Psychology, Texas A&M University, College Station, Texas, TX, USA
OVERVIEW If depression is the common cold of psychopathology, then personality disorders are the chronic headache. Common colds come and go. But like chronic headaches, personality disorders can be much more persistent, and they are more difficult to treat. While the common cold or depression may temporarily affect an individual’s ability to maintain good work habits and social relationships, a chronic headache or personality disorder can plague a person in those areas for decades or even a lifetime. In this way, a personality disorder can have deleterious effects that become cumulative over time and have reverberating effects well into later life. When personality disorders are present in later life, they can have unique implications for families, society, and the affected individuals. With advancing age, an individual’s changing needs often require a greater reliance on family. Meeting the needs of an older adult with a personality disorder may be particularly difficult. Consider a man with narcissistic personality disorder who has steadily alienated his family members through his egotistical conduct over the course of a lifetime. Now, when his family must decide who (if anyone) will have the responsibility of providing care for their abrasive relative, the family members may be understandably reluctant to volunteer for this unpleasant task. This decision process may, in turn, create new tension within the family that may cause difficulties that extend beyond the death of the difficult family member. Another area of unique concern is the immense cost of health care that treating older adults with personality disorders may entail. People with personality disorders are more prone to suffer from a variety of medical illnesses, have long hospital stays, and generally experience poor treatment outcomes (Gish et al., 2001; Spiessl, Hubner-Liebermann, Binder, & Cording, 2002; Whiteman, Deary, & Fawkes, 2000). To add to these misfortunes, the very nature of personality disorders makes sufferers more likely to exhibit inappropriate behavior when hospitalized. These inappropriate behaviors are known to affect both hospital staff and other residents. Granted that older adults are already the primary users of the health care system, those older adults with personality disorders will inevitably be especially burdensome for the health care system (Agronin & Maletta, 2000; Rosowsky, 1999; Rosowsky & Gurian, 1992; Rosowsky & Smyer, 1999). In addition to creating difficulty for their families and the health care system, older adults with personality disorders may themselves experience difficulty adjusting to changes that result from the normal aging process. Psychologically healthy adults usually adjust more or less satisfactorily to their gradually declining physical strength, youthful attractiveness, vitality, health, and cognitive abilities. Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10004-1 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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Older adults with personality disorders, however, may experience unique adjustment challenges. Take for example an older woman with a narcissistic personality disorder whose egotism was satisfied in her younger years by a reasonable belief in her own physical attractiveness. As a young woman she may have devoted much energy to focusing on and maintaining her appearance, potentially at the cost of fostering significant character flaws related to this excessive vanity. With ever-increasing age, the challenges to her ego may become particularly incisive. As her primary source of personal pride rests on superficial beauty, her decreasing muscle tone and increased wrinkling of the skin may become psychologically devastating. With no fallback and no alternative source of self-esteem, as this woman’s youth wanes she may be prone to develop a mental disorder such as depression. Understanding the interaction between personality disorder pathology and the challenges posed by aging is a complicated matter. What makes the situation especially difficult to understand is the absence of adequate measurement instruments. Existing measures of personality disorder pathology were not designed with an older adult population in mind (Agronin & Maletta, 2000; Balsis, Woods, Gleason, & Oltmanns, 2007; Segal, Hersen, Van Hasselt, Silberman, & Roth, 1996). Before we can study the influence of personality disorder pathology in the lives of older adults, therefore, it is necessary to develop measurement instruments that are specifically tailored to address the unique context(s) of older people (Agronin & Maletta, 2000; Clarkin, Spielman, & Klausner, 1999; Mroczek, Hurt, & Berman, 1999). The remaining part of this chapter will address fundamental problems with the assessment of personality disorders and highlight the specific challenges that arise when later life is considered. We begin this discussion with a review of some basic definitional issues.
DEFINITIONAL ISSUES To qualify for a personality disorder diagnosis in DSM-IV-TR, a person must fit the general definition of personality disorder (which applies to all 10 subtypes) and must also meet the specific criteria for a particular type of personality disorder. The specific criteria consist of a list of traits and behaviors that characterize the disorder. The general definition emphasizes the duration of the pattern and the social impairment associated with the traits in question. The problems must be part of “an enduring pattern of inner experience and behavior that deviates markedly from the expectations of the individual’s culture” (American Psychiatric Association, 2000), which is evident in two or more of the following domains: cognition (such as ways of thinking about the self and other people); emotional responses; interpersonal functioning; or impulse control. Beyond these requirements, the pattern of maladaptive experience and behavior must also be: Inflexible and pervasive across a broad range of personal and social situations; The source of clinically significant distress or impairment in social, occupational, or other important areas of functioning; Stable and of long duration, with an onset that can be traced back at least to adolescence or early adulthood. The concept of social dysfunction plays an important role in the definition of personality disorders. It provides a large part of the justification for defining these problems as mental disorders. If the personality characteristics identified in the DSM-IV-TR criterion sets typically interfere with the person’s ability to get along with other people and perform social roles, they become more than just a collection of eccentric traits or peculiar habits. They can then be viewed as a form of harmful dysfunction (Wakefield, 1999). In fact, most of the clusters of pathological personality traits that are described on Axis II do lead to impaired social functioning or occupational impairment (Oltmanns, Melley, & Turkheimer, 2002; Skodol, Johnson, Cohen, Sneed, & Crawford, 2007).
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The DSM-IV-TR treats personality disorders as discrete categories, and assumes that there are distinct boundaries between normal and abnormal personalities. However, there are many people with serious personality problems who do not fit the official DSM-IV-TR subtypes. The categorical approach to diagnosis forces clinicians to use a threshold that has been set to distinguish between normal and abnormal personality types. These thresholds have been called arbitrary by many, because most of them have no empirical support or logical justification. Recent work supports the notion that these thresholds are indeed “arbitrary” because they can correspond to varying levels of latent pathology (Balsis, Cooper, Lowmaster, & Benge, in press). Another frequent complaint about the definition of personality disorders is that there is considerable overlap among categories. Many patients meet the criteria for more than one type (Grant et al., 2005). It is cumbersome to list multiple diagnoses, especially when the clinician is already asked to list problems on both Axis I and Axis II. For this reason, many clinicians are reluctant to make more than one diagnosis on Axis II; consequently, much information is frequently left out. Developmental issues create additional challenges for the assessment of personality disorders, particularly with regard to the formal diagnostic categories defined in DSM-IV-TR (Tackett, Balsis, Oltmanns, & Krueger, 2009). One problem is that the DSM-IV-TR allows for a diagnosis of a personality disorder if “its onset can be traced back at least to adolescence or early adulthood.” The manual does not allow for the possibility of a late-onset personality disorder (Widiger & Seidlitz, 2002). How is information about adolescence and early adulthood collected for an older adult? After all, that time period might have occurred 50 or 60 years ago. If a 70-year-old person currently exhibits a sufficient number of features to qualify for a specific personality disorder diagnosis, the clinician would need to establish that these symptoms were also evident many years ago. Should we rely on the person’s recollections of long past experiences to verify the diagnosis, recognizing that autobiographical memories are often flawed? The most practical solution is to focus on the person’s recent experience, recognizing that it is difficult to create a completely accurate portrait of the past. For these reasons and many others most experts favor the development of an alternative classification system for personality pathology, one that would be based on a dimensional view of current personality pathology that is grounded in extensive research on the basic elements of personality. A dimensional system might provide a more complete description of each person, and it would be more useful with patients who fall on the boundaries between different types of personality disorder. It might also be easier to use than the DSM-IV-TR approach. One proposal is to use the 5-factor model as the basic structure for a comprehensive description of personality problems (Widiger & Trull, 2007). Later in this chapter, we will discuss DSM-based and alternative systems in depth. For now though, it is important for the reader to recognize that there are both DSM-based and trait-based conceptualizations of personality pathology.
EPIDEMIOLOGY OF PERSONALITY DISORDERS Personality disorders are generally considered to be among the most common forms of psychopathology, when they are considered as a general category. Several epidemiological studies in the United States and in Europe have used semi-structured diagnostic interviews to assess personality disorders in samples of people living in the community. In studies that have examined community-based samples of adults, the overall lifetime prevalence for having at least one personality disorder (any type) varies between 10e14% (Coid, Yang, Tyrer, Roberts, & Ullrich, 2006; Lenzenweger et al., 2007; Torgersen, Kringlen, & Cramer, 2001). While this figure tends to be relatively consistent from one study to the next, prevalence rates for specific types of personality disorder vary quite a bit from one study to the next. The highest prevalence rates are
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usually found to be associated with obsessiveecompulsive personality disorder, antisocial personality disorder, and avoidant personality disorder, which may affect 3 or 4% of adults. The most precise information that is available regarding the prevalence of personality disorders in community samples is available for the antisocial type (Moran, 1999). In two large-scale epidemiological studies of mental disorders, structured interviews were conducted with several thousand participants. The overall lifetime prevalence rate for antisocial personality disorder (men and women combined) was 3% in both studies (Kessler, McGonagle, Zhao, & Nelson, 1994; Robins & Regier, 1991). The prevalence of other specific types of personality disorders tends to be approximately 1 or 2% of the population. The most obvious exception is narcissistic personality disorder, which appears to be the least common form, affecting much less than 1% of the population. Investigators tend to identify very few cases of narcissistic personality disorder when they interview people in community samples (as opposed to clinic settings). The fact that almost no one endorses narcissistic symptoms does not necessarily mean, however, that the disorder does not occur. Rather, it seems possible that people who experience these features do not recognize the nature of their own problems or are unwilling to admit them. Self-report measures, such as questionnaires and interviews, may not be effective instruments for assessing narcissistic personality disorder. More accurate information might be obtained from other people who know the person well and can report examples of grandiosity, exploitation, or lack of empathy (Oltmanns & Turkheimer, 2006). Another issue regarding prevalence rates involves comorbidity. There is considerable overlap among categories in the personality disorders. At least 50% of people who meet the diagnostic criteria for one personality disorder also meet the criteria for another disorder (Coid et al., 2006). To some extent, this overlap is due to the fact that similar symptoms are used to define more than one disorder. For example, impulsive and reckless behaviors are part of the definition of both antisocial and borderline personality disorders. Social withdrawal is used to define schizoid, schizotypal, and avoidant personality disorder. There is also extensive overlap between personality disorders and disorders that are diagnosed on Axis I of DSM-IV-TR. Approximately 75% of people who qualify for a diagnosis on Axis II also meet criteria for a syndrome such as major depression, substance dependence, or an anxiety disorder (Dolan-Sewell, Krueger, & Shea, 2001). This overlap may also be viewed from the other direction: many people who are treated for a mental disorder listed on Axis I, such as depression or alcoholism, would also meet the criteria for a personality disorder (Thomas, Melchert, & Banken, 1999). Borderline personality disorder appears to be the most common personality disorder among patients treated at mental health facilities (both inpatient and outpatient settings). Averaged across studies, the evidence suggests that this disorder is found among slightly more than 30% of all patients who are treated for psychological disorders (Mattia & Zimmerman, 2001). The overall prevalence of personality disorders is approximately equal in men and women (Weissman, 1993). There are, however, consistent gender differences with regard to at least one specific disorder: antisocial personality disorder is unquestionably much more common among men than among women, with rates of approximately 5% reported for men and 1% for women (Kessler et al., 1994). Thus, antisocial personality disorder is actually an alarmingly common problem among adult males in the United States. Epidemiological evidence regarding gender differences for the other types of personality disorder is much more ambiguous. Borderline personality disorder and dependent personality disorder may be somewhat more prevalent among women than men, but the evidence is not strong (Skodol & Bender, 2003). There has been some speculation that paranoid and obsessiveecompulsive personality disorders may be somewhat more common among men than women (Coid et al., 2006). The prevalence of personality disorders in later life is an under-studied phenomenon. Still, of the handful of studies that have been conducted, the general conclusion has been that personality disorders become rarer with age. Using community-dwelling samples, Ames and Molinari (1994) found that just
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under 18% of the younger adults were diagnosed with a personality disorder compared with only about 13% of the older adults. In an examination of a clinical sample of psychiatric inpatient veterans, while many younger adults were diagnosed with a personality disorder (76%), considerably fewer older adults were given this diagnosis (55%) (Kenan et al., 2000). Data from longitudinal studies also provide evidence that increasing age is associated with reduced susceptibility to personality disorders (e.g., Lenzenweger, Johnson, & Willett, 2004; see Paris, 2003, for a brief review). The underlying cause of this apparent decrease of personality disorders with age is unclear. One theory is that with the general slowing associated with age, some of the vitality that once fueled personality disorders is lost. A “mellowing” effect therefore takes place that reduces the problematic conduct to subclinical levels (Kenan et al., 2000; Paris, 2003). Some studies, however, suggest that this reduction of personality disorders with age may be somewhat illusory. The idea is that while certain symptoms of personality disorders may disappear with increasing age, this does not eliminate all social and interpersonal problems in the lives of these older individuals (Drake, Adler, & Valliant, 1988; Moffitt, Caspi, Harrington, & Milne, 2002). This notion raises the possibility that although the behavioral expression of personality disorders may change over time, these altered forms of conduct are by no means innocuous. In other words, the older adults may still have the personality disorder from youth, but it may express itself differently in later life. If this is true, then the reported reductions in personality disorders for older adults may be best explained as an artifact of the measurement instrument employed. What may be needed is an adapted measure that will be sensitive to the changing face of personality disorder that appears with advancing age (Agronin & Maletta, 2000; Clarkin et al., 1999; Mroczek et al., 1999; Segal et al., 1996). We return to this possibility later in the chapter.
STABILITY AND CHANGE Temporal stability is one of the most important assumptions about personality disorders. Evidence for the assumption that personality disorders appear during adolescence and persist into adulthood has, until recently, been limited primarily to antisocial personality disorder. A classic follow-up study by Lee Robins (1966) began with a large set of records describing young children treated for adjustment problems at a clinic during the 1920s. Robins was able to locate and interview almost all of these people, who by then were adults. The best predictor of an adult diagnosis of antisocial personality was conduct disorder in childhood. The people who were most likely to be considered antisocial as adults were boys who had been referred to the clinic on the basis of serious theft or aggressive behavior; who exhibited such behaviors across a variety of situations; and whose antisocial behaviors created conflict with adults outside their own homes. More than half of the boys who exhibited these characteristics were given a diagnosis of antisocial personality disorder as adults. Another longitudinal study has collected information regarding the prevalence and stability of personality disorders among adolescents (Bernstein, Cohen, Velez, & Schwab-Stone, 1993; Cohen, Crawford, Johnson, & Kasen, 2005). This investigation is particularly important because it did not depend solely on subjects who had been referred for psychological treatment, and because it was concerned with the full range of personality disorders. The rate of personality disorders was relatively high in this sample: seventeen percent of the adolescents received a diagnosis of at least one personality disorder. Categorically defined diagnoses were not particularly stable; fewer than half of the adolescents who originally qualified for a personality disorder diagnosis met the same criteria two years later. Nevertheless, many of the study participants continued to exhibit similar problems over the next eight years. Viewed from a dimensional perspective, the maladaptive traits that represent the core features of the disorders remained relatively stable between adolescence and young adulthood (Crawford, Cohen, & Brook, 2001; Skodel et al., 2007).
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Several studies have examined the stability of personality disorders among people who have received professional treatment for their problems, especially those who have been hospitalized for schizotypal or borderline disorders. Many patients who have been treated for these problems are still significantly impaired several years later, but the disorders are not uniformly stable (Grilo et al., 2004; Paris, 2003). Recovery rates are relatively high among patients with a diagnosis of borderline personality disorder. If patients who were initially treated during their early twenties are followed up when they are in their forties and fifties, only about one person in four would still qualify for a diagnosis of borderline personality disorder. The long-term prognosis is less optimistic for schizotypal and schizoid personality disorders. People with these diagnoses are likely to remain socially isolated and occupationally impaired. But even these results must be viewed within the lens of age associated measurement bias and the relevant psychometric concerns. The extent to which personality disorders dissipate or remain stable over the course of a lifetime has received remarkably little attention. One reason for the lack of research on this topic is that we do not have instruments that are sufficiently tailored to the interests and lifestyles of older adults. Despite the dearth of research on late-life changes in personality disorders, a good deal of focus has been given to the relative stability (or change) of normal personality traits over the lifespan. The issue has been examined using both longitudinal and cross-sectional personality data (e.g., Roberts & DelVecchio, 2000). A common finding has been that change in personality is limited to minor increases in agreeableness and conscientiousness, and minor decreases in neuroticism, extraversion, and openness to experience (e.g., Costa & McCrae, 1988; Terracciano, McCrae, Brant, & Costa, 2005). The interpretation of this body of research is, however, equivocal. The primary dispute centers around whether the degree of change observed in these studies is functionally significant or not. While some researchers dismiss the change as being a rather trival difference, others regard the change as being an important one. The latter contingent points out that many of these differences represent as much as a standard deviation of change (Roberts, Walton, & Viechtbauer, 2005).
PSYCHOMETRIC CONCERNS IN LATER LIFE When applied to older adults, the weak psychometric properties of standard personality disorder assessments are quite evident. Face validity is severely compromised by the use of items clearly relevant only to the lifestyle of younger adults (Segal, Coolidge, & Rosowsky, 2006). One obvious example is the criterion for avoidant personality disorder, which begins, “Avoids occupational activities . . .” As most older adults are either retired or semi-retired, they are unlikely to endorse this item, regardless of whether they have avoidant personality disorder. This item, therefore, would not adequately assess this latent personality disorder. The criterion for schizoid personality disorder, “Neither enjoys nor experiences sexual relations,” is another example of an item that has poor face validity for use with older adults. Older adults may not endorse this item because of physical or contextual factors related to aging, rather than for reasons having anything to do with schizoid pathology. Perhaps physical changes have reduced the quality of their sexual experience or their spouse has passed away, making the item largely irrelevant (see Zweig, 2008). Item face validity, of course, is merely a qualitative interpretation of the relevance of an item to the phenomenon it purports to measure. Any legitimate problem with face validity, however, becomes quantifiable in terms of its influence on a wide range of psychometric properties, including content validity, criterion validity, internal reliability, utility, and so on (Balsis, Segal, & Donahue, 2009). For example, consider how having poor face validity influences the content validity (defined as the ability of a set of items together to measure all aspects of a particular phenomenon) of the eight items for obsessiveecompulsive personality disorder (OCPD). At least three of these items (e.g., miserly pattern of spending; difficulty discarding worn-out things; overly
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conscientious about morals and ethics) measure behavior that, while relevant to OCPD in young adults, may also happen to be associated with generational differences between younger and older cohorts. Since these three items accordingly cannot be relied upon in the assessment of OCPD in older adults, only five items remain to capture behavior associated with the disorder. As any reduction in the number of items on an assessment means that a lesser range of features relevant to the disorder are covered, the content validity of this assessment has been decidedly impaired by the effective loss of nearly one-half of its items. Content validity is but one negative consequence of poor face validity. The lack of adequate face validity will also have negative consequences for most types of reliability and validity. When an item measures some aspect of aging rather than personality disorder pathology, measurement error has been introduced into the set. The resulting weakness of the assessment will necessarily mean that only weak correlations can be expected with external measures needed for verifying different types of validity (e.g., convergent, divergent, predictive). Inter-rater reliability between independent assessments will be equally difficult to establish. We have been pursuing many of these statistical shortcomings in our own empirical work (e.g., Balsis, Gleason, Woods, & Oltmanns, 2007).
APPROACHES TO ASSESSMENT OF PERSONALITY DISORDERS Personality disorders are among the most controversial categories in the diagnostic system for mental disorders (Kendell, 2002; Tyrer et al., 2007). They are difficult to identify reliably, their etiology is poorly understood, and there is relatively less evidence to indicate that they can be treated successfully (compared with mood and anxiety disorders, for example). For all of these reasons, it is important to think critically about the validity of these categories. Although the DSM conceptualization of personality disorders is flawed, and although personality disorders are difficult to define and measure, they are also crucial concepts in the field of psychopathology. Several observations support this argument. First, personality disorders are associated with significant social and occupational impairment. They disrupt interpersonal relationships, including those involving friends and coworkers. Personality disorders also play an important role in many cases of marital discord and violence (Holtzworth-Munroe, 2000; Whisman, Tolejko, & Chatav, 2007). Second, the presence of pathological personality traits during adolescence is associated with an increased risk for the subsequent development of other mental disorders (Cohen, Chen, Crawford, Brook, & Gordon, 2007; Krueger, 1999). Negative emotionality (high neuroticism) often predicts the later onset of major depression or an anxiety disorder. Impulsivity and antisocial personality increase the person’s risk for alcoholism. Third, in some cases, personality disorders actually represent the beginning stages of the onset of a more serious form of psychopathology. Paranoid and schizoid personality disorders, for example, sometimes precede the onset of schizophrenic disorders. Finally, the presence of a comorbid personality disorder can interfere with the treatment of a disorder such as depression (Fournier et al., 2008). All of these findings have been gleaned even though these concepts are difficult to measure. The following case study illustrates how personality pathology can present itself in unique ways in late-life, making it difficult to measure using standard measures designed for a younger adult’s life context.
Case Study 1 John is a 78-year-old veteran and retired police officer. Although he is clearly somewhat frail, he has a ruggedness that suggests he was once a legitimately tough guy. He presented for therapy at the request of his new physician, who had noticed scarring and a few small punctures on his chest. During his intake, John explained that these punctures were caused years ago by high heels. Specifically, he stated that during sexual encounters with prostitutes (which were frequent) he would demand that the prostitutes stomp on his chest with their heels. He explained further that when younger he experienced only limited injury from this unusual practice, because at that time he was sufficiently
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strong that he could ensure some level of caution, suffering only the damage that he permitted. He explained further that these stompings made him feel “whole.” In a very real way, this was a type of self-harm. In recent years, John has stopped this behavior for several reasons. His ability to perform sexually has changed and he no longer has the strength to resist injury from the high heels. Indeed, the practice had fully become life threatening. John also described how in middle age he would exhibit what he called a “righteous indignation” against those who broke rules. He provided an example of how he typically reacted. He explained that he once saw a car run through a red light. John was so angered by this traffic violation that he somehow managed to move his truck in front of the offender’s vehicle. He then stopped in the middle of the street and slammed his truck in reverse, smashing into the said unlawful automobile. This type of aggression showed up in other areas of his life as well. John often found himself in bar fights and other physical conflicts. As the years have passed, however, John no longer expresses his anger by directly confronting people. Rather, he gives outlet to his indignation through such relatively benign forms of retaliation as, for example, following a recalcitrant driver back to his home and letting the air out of his tires. Thus, while John still experiences some exaggerated emotional reactions, he now finds alternative ways to express these feelings than by the direct physical confrontations that his greater health and fitness emboldened him to engage in when he was younger. When he was very young, John’s temper often got him into trouble. He was often in detention at school and was considered a class bully. He was able to graduate high school, but had terrible grades because of poor effort. Accordingly, with few other options after graduation, he decided to go into the military. He thought entering the military would give him a chance to develop skills for a career. This possibility began to be undermined by his habit of pulling pranks on his peers. This practice may well have been a factor for his premature discharge under somewhat murky circumstances. Following this dismissal, and after changing jobs several times, he eventually became a police officer. His hope was that this job would offer him an ideal (and legal) opportunity to enact revenge on those rule-breakers that were the object of his intense ire. Unfortunately, he soon found that his usual practice of writing tickets to individuals was not enough to satiate his powerful urges for retaliation. He began to escalate the aggressiveness of his responses to violators of the law. Soon, he became more aggressive in the field than the law would allow and was written up several times for exerting too much physical force. This led to John being reassigned to desk duty for many years. He was eventually let back into the field, not because of good behavior but instead because he had apparently alienated his fellow officers at the police station. The latter were finally successful in getting him out of the station by getting him back into the field. Once he was at last back in the field, John redirected his anger towards the “establishment,” an antagonist that he can only vaguely explain. He no longer expressed anger towards, or directed aggression at, those who committed crimes. Instead, he looked upon them with indifference and allowed them to violate the law. This passivity, he explained, was his way of getting back at “The Man.” John’s problems were not limited to self-harm, impulsive outbursts of rage, and occupational difficulties. He also had trouble maintaining relationships with friends and family. He had had three wives, all of whom would eventually divorce him. Nor did any relationship remain between himself and either of his two children, so he found himself generally alone in later life. Although John clearly met a diagnosis of antisocial and borderline PD when younger, his current therapist had a difficult time applying many of the DSM diagnostic criteria to his present situation. For example, although John once met Antisocial criterion #4 (repeated physical fights or assaults), his aggression now manifested itself in nonviolent (though malicious) acts of retaliation, such as the letting of air out of people’s tires. Further, whereas in earlier life he would have met criteria #1 (performing acts that are grounds for arrest) in the form of physically violent confrontations, he would later harm society in his role as a police officer when he spitefully allowed violent crimes to occur with impunity. Although in this way John has maintained a standard of exaggerated emotional response consistently throughout his life, the DSM criteria were not sensitive to this stability. The same sort of diagnostic dilemma arose for borderline PD. Whereas in the past he would have met criterion #4 (impulsivity in areas that are self-damaging, such as sex and reckless driving), his behavior no longer met the formal criteria for this diagnosis. Although the underlying tendencies are still present, they are not enacted in a behavioral form recognized by DSM verbiage. For a somewhat different reason, John also no longer meets criterion #2 (unstable interpersonal relationships). This is simply because he no longer has any significant interpersonal relationships left of any kind.
This case study illustrates several additional important features of personality disorders that have direct implications for their valid assessment. Most other forms of mental disorder, such as anxiety disorders and mood disorders, are ego-dystonic; that is, people with these disorders are distressed by their symptoms and uncomfortable with their situations. The distress is very much accessible to the
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person. They can readily report the distress. Personality disorders are usually ego-syntonicdthe ideas or impulses with which they are associated are acceptable to the person. People with personality disorders frequently do not see themselves as being disturbed. John, for example, saw no problems with enacting revenge on those committing crimes. We might also say that they do not have insight into the nature of their own problems. John, for example, did not believe that his repeated antisocial behavior represented a problem. The other people for whom he created problems were suffering, but he was not. Many forms of personality disorder are defined primarily in terms of the problems that these people create for others rather than in terms of their own subjective distress. The ego-syntonic nature of many forms of personality disorder raises important questions about the limitations of self-report measuresdinterviews and questionnairesdfor their assessment. Many people with personality disorders are unable to view themselves realistically and are unaware of the effect that their behavior has on others. Therefore, assessments based exclusively on self-report may have limited validity (Klein, 2003; Oltmanns & Turkheimer, 2009). Don’t forget that John didn’t seek therapy on his own. He was encouraged to attend by his physician who noticed punctures all over his chest. People with personality disorders may underestimate the frequency and severity of certain aspects of personality pathology, particularly those problems associated with narcissism. The development of alternative assessment methods, such as collecting information from peers, family members, or mental health professionals, remains an important challenge for future research studies (Clark, 2007). Thus, all of the information in this next section needs to be considered in light of these comments.
Semi-Structured Interviews The most widely recognized approach to the assessment of personality disorders, in both research and clinical practice, involves the use of interviews. Many different semi-structured interviews have been developed for the diagnosis of personality disorders (Zimmerman, 1994). Examples include the Structured Interview for DSM-IV Personality (SIDP-IV; Pfohl, Blum, & Zimmerman, 1997) and the Personality Disorders Interview (PDI-IV; Widiger, Mangine, Corbitt, Ellis, & Thomas, 1995). Each of the interview schedules provides a list of opening questions on topics related to the diagnostic features, as well as suggested follow-up probes to be used whenever the person admits problems in a particular area. Clark and Harrison (2001) have described in detail the advantages and potential weaknesses of these instruments. Most efforts to evaluate empirically the utility of semi-structured interviews have focused on the issue of reliability. Inter-rater reliability estimates in a joint interview format are higher (average kappas above 0.60) than either short-interval testeretest or the long interval testeretest. Reliability increases when personality disorders are computed using dimensional scores rather than categorical scores (Pilkonis et.al., 1995; Zimmerman & Coryell, 1989). Less attention has been paid to the validity of diagnostic interviews in the assessment of personality disorders. Convergent reliability (different interviews compared with each other or an interview compared with a self-report questionnaire) has been shown to be relatively poor (Clark, Livesley, & Morey, 1997). Clinicians should therefore consider the results of diagnostic interviews with some caution. These instruments are considered to be the “gold standard” with regard to the diagnosis of personality disorders, but they depend largely on the ability or willingness of the person to recognize the nature of their problems.
Self-Report Another popular approach to the assessment of personality disorders involves the administration of self-report questionnaires. Several different instruments are available. Some focus on symptoms of specific personality disorders, others focus on personality traits that are related to personality
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pathology, and a final option would be to collect information regarding interpersonal difficulties that follow as a consequence of personality disorders. Rather than focusing on diagnostic scales, with an emphasis on somewhat arbitrary thresholds and a categorical view regarding the presence or absence of specific personality disorders, some self-report instruments place greater emphasis on personality dimensions. Some of these focus exclusively on normal personality traits. One popular alternative of this type is the NEO-PI-R, a questionnaire that provides scores based on the five-factor model of personality (Costa & McCrea, 1992). Using this type of measure for the assessment of traits that are related to personality disorders, one might expect patterns of scores that have been shown to be associated with each of the different disorders (Lynam & Widiger, 2001; Miller, Pilkonis, & Clifton, 2005). For example, a person with antisocial personality disorder would be expected to produce scores that are high on some facets of Neuroticism, such as angry hostility and impulsiveness, high on certain facets of Extraversion, such as excitement seeking, low on certain facets of Agreeableness, such as tendermindedness and straightforwardness, and low on certain facets of Conscientiousness, such as self-discipline and dutifulness. A person who is pathologically dependent would also be expected to produce a high score on Neuroticism (especially anxiousness and selfconsciousness), as well as high scores on Agreeableness (especially trust, compliance, and modesty). Many leading investigators favor this approach to the assessment of pathological personality characteristics (Mullins-Sweatt, Smit, Verheul, Oldham, & Widiger, 2009; Samuel & Widiger, 2008). The Schedule for Nonadaptive and Adaptive Personality (SNAP) is a factor analytically derived, self-report instrument that is designed to measure trait dimensions that are important in the domain of personality disorders (Clark, 1993; Simms & Clark, 2006). The instrument includes both obvious and more subtle items which are intended to tap the high and low ends of all of the trait dimensions. The core of the SNAP is composed of 15 scales, including 12 trait scales associated with relatively specific forms of personality pathology and three more general “temperament” scales (negative temperament, positive temperament, and disinhibition). For example, the specific trait scales most related to paranoia include mistrust, aggression, and detachment. The SNAP also includes five validity scales that can be used to identify subjects who have responded carelessly or defensively. They are also sensitive to various other response sets that might contribute to an invalid profile. In addition to the 15 trait scales, the SNAP can also be used to derive scores on 13 diagnostic scales, which correspond to each of the specific personality disorder categories included in DSM-IV. The combination of validity scales, trait scales, and diagnostic scales makes the SNAP an especially useful instrument to be used in an assessment aimed at the identification of personality problems related to paranoia. For a self-report measure that maps directly onto the DSMIV criteria, you may want to use the self-report version of the Multi-source Assessment of Personality Pathology (Oltmanns & Turkheimer, 2006; see also Appendix A).
Informant-Report The fact that semi-structured interviews and self-report questionnaires have traditionally been used in the assessment of personality disorders should not imply that they are the best sources of information. Because realistic, accurate information about a client’s behavior may not be obtained from the clients themselves, it is often useful to collect information from other sources. Family members, friends, and other acquaintances may provide an important perspective. Studies that have examined the relation between self-report data and informant-report data regarding personality pathology have found that the two sources often disagree (Klonsky, Oltmanns & Turkheimer, 2002; Oltmanns & Turkheimer, 2009). Comparisons between self- and peer-reports reveal an interesting paradox regarding personality disorders. Take paranoia as an example. People who are viewed by their peers as being paranoid do not see themselves as being suspicious or lacking in trust. Rather, they described themselves as being
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angry and hostile (Clifton, Turkheimer, & Oltmanns, 2004). Research has shown that those who had thought of themselves as being paranoid were often regarded by others as cold and unfeeling. While it has not yet been determined how the two very different types of information should be used, it is fair to state that patient and informant evaluation represent two different assessment approaches to personality that produce two different portrayals of a client’s personality disorder. Perhaps utilizing information from both sources may help a clinician gain a more comprehensive picture of a client’s personality disorder than if the clinician were to rely solely on one source of information.
Later-Life Assessment Issues As discussed previously, the DSM criteria were developed without closely considering the context of later life. There are different ways to address this measurement issue. Just recently, two age-specific measures have been created. In one (see Appendix B), which is a categorical measure (van Alphen, Engelen, Kuin, Hoijtink, & Derksen, 2006), there are 16 items scored yes/no. Seven items cover habitual behavior and nine cover biographical information. Strengths of this measure include its usability, length, focus on habitual behaviors, and biographical information. Limitations may include its lack of breadth and its categorical scoring system. Although the phenomena of interest likely exist along several associated dimensions, this measure assesses each feature categorically and doesn’t concentrate on gradations of personality. A second measure that was developed is a hybrid personality disorder scale (Balsis, 2009). The goal during item creation in this measure was to improve upon the current diagnostic criteria, many of which poorly capture personality disorder pathology when applied to older adults. This measure sought to establish better indicators of the personality disorders as they present themselves in later life. One hundred items (10 for each personality disorder) were written specifically for older adults on the basis of clinician experiences. Of these items, results showed that 37 worked better than some of the current diagnostic criteria. On average, three or four new items per personality disorder replaced former items that functioned less than optimally. Overall, clinicians favored certain DSM items over particular novel items in some cases, while favoring certain novel items over particular DSM items in other cases. Replacing some of the psychometrically underperforming items with these new items increased the face validity and, correspondingly, the content validity of the diagnostic sets. This measure is available from the chapter’s second author. Although the measures that were just described may work well to assess personality disorder pathology in older adults, it might be preferable for investigators who want to study personality disorder pathology longitudinally into later life or cross-sectionally among younger and older participants (Balsis et al., 2007) to have a measure that is age neutral. Otherwise, longitudinal studies would require researchers either to switch measures at some point (or apply weighting schemes during data analysis) from the younger adult measure to the older adult measure sometime during the data collection process. This would potentially be a serious confound in the analysis of data across time. Of course, the same problem would arise in crosssectional studies. Any differences between younger and older groups might be an artifact of using separate measures for different groups. Developing an age-neutral measurement system that would work equally well across all age groups is one way to help solve these problems (Mroczek et al., 1999). Obviously, the benefit of an age-neutral measure is that one can compare scores across age groups and over time without concern for measurement artifact associated with the two separate measures. An age-neutral measure would enable investigators to study the progression of personality change over the lifespan and construct age-related personality theory. It also would allow clinicians to have confidence in using a measure without concern for whether it is appropriate for the age of a client (Zweig, 2008). Two prominent personality measures that purport to be age-neutral are already available. One such measure is the NEO (Costa & McCrae, 1992), which has been validated across several forms. Many
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researchers who study personality in older adults support its use because older adults were closely considered during its development. It also has the advantage of using a dimensional instead of a categorical approach in the assessment of each of the five personality traits that it measures. Still, there are legitimate concerns with simply using the NEO as a replacement for the DSM personality system. First and foremost, this measure was designed to assess “normal” or typical personality. Therefore, it is unknown whether it is sufficiently attuned for the assessment of a specific personality disorder pathology as described in the DSM. Nonetheless some have proposed that the NEO can measure personality disorder pathology (Widiger, Trull, Clarkin, Sanderson, & Costa, 1994). While a growing amount of evidence supports this notion, the majority of this research uses samples of younger adults. Thus, it remains unclear whether the NEO can also flexibly assess personality disorder pathology in later life. The other measure that was developed with the context of aging in mind is the Personality Assessment Inventory (PAI; Morey, 1991). Like the NEO, the PAI measures several personality traits and includes dimensional subscales for each of these traits. The actual development of the PAI was notably different from that of the NEO, however. During its creation, items that contained measurement bias across two broad age groups were systematically identified and eliminated from the measure. The PAI, however, is not an ideal tool for our purposes because it was not designed to identify each of the personality disorders. Nonetheless, the NEO and the PAI each offers different examples for how to devise an age-neutral assessment of personality. A researcher who wants to develop an ideal age-neutral system should, similar to the developers of the NEO, consider the later-life context during the item generation and selection phase. At the same time, the researcher should make use of analytic techniques (e.g., item response theory) to empirically select items that are appropriate for all age groups. Fortunately, these techniques are by no means mutually exclusive and would presumably be able to be used sequentially to develop a measure of even greater reliability and validity.
Dementia-Related Issues As people age, they may experience changes secondary to dementia. In addition to the typical cognitive changes, personality changes also occur with dementia. These changes are often “negative,” in the sense that individuals tend to move towards what is usually considered the less adaptive end of each trait’s continuum. Namely, they tend to become more neurotic, less extraverted, less agreeable, less open, and less conscientious. These changes, especially the most pronounced change of increased neuroticism, are hallmarks of personality pathology and the personality disorders (Lynam & Widiger, 2001). On the surface, accounting for personality pathology and personality disorders that emerge secondary to dementia should be easy. One should simply be able to assess the onset of dementia and the onset of the personality changes and make a good clinical determination as to whether the dementia underlies the personality. Unfortunately, untangling dementia-related personality change from non-dementia-related personality change is not such an easy task. The reason this is difficult to do is that dementia-related personality changes may occur years before an individual experiences sufficient cognitive changes necessary to warrant a diagnosis. Indeed, there is both anecdotal evidence and good preliminary data to suggest that personality change may precede measurable cognitive loss in Alzheimer’s Disease (AD). For example, when Alzheimer (1907) first described the disease in his patient “. Auguste D, indicating that she showed suspiciousness of her husband as the first noticeable sign of the disease (translated with slight variation in Siegler et al., 1991 and Oppenheim, 1994).” Only recently has Alzheimer’s initial clinical description of personality change received empirical support (Balsis, Carpenter, & Storandt, 2005). Using longitudinal data, the Balsis et al. study showed
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that personality change is a symptom of AD and that it precedes cognitive changes, such as short-term memory loss and word finding difficulties. These results suggest that personality changes may be early indicators of AD. A difficulty, though, arises for understanding non-dementia personality change in later life. When an older adult presents with new personality disorder symptoms, how is a clinician to know if the symptoms are secondary to an insipient undetected dementia? Ruling out dementia-related personality change is difficult because the measurement instruments to detect dementia are most effective in the moderate range (not the early range) of disease severity. There are no data that suggest that current personality disorder measures can be used to identify which patients experiencing personality change are experiencing it secondary to dementia. This means that when there is a case of personality change in late-life, it is difficult to determine the cause of that change. The best advice in this regard is for a clinician to continue to monitor the individual’s cognitive changes to see if the person eventually develops dementia. If not, he or she can be assured that the personality change is independent of such a dementia process.
Multicultural Issues In DSM-IV-TR, personality disorders are defined in terms of behavior that “deviates markedly from the expectations of the individual’s culture.” In setting this guideline, the authors of DSM-IV-TR recognized that judgments regarding appropriate behavior vary considerably from one society to the next. Some cultures encourage restrained or subtle displays of emotion, whereas others promote visible, public displays of anger, grief, and other emotional responses. Behavior that seems highly dramatic or extraverted (histrionic) in the former cultures might create a very different impression in the latter cultures. Cultures also differ in the extent to which they value individualism (the pursuit of personal goals) as opposed to collectivism (sharing and self-sacrifice for the good of the group) (Triandis, 1994). Someone who seems exceedingly self-centered and egotistical in a collectivist society, such as Japan, might appear to be normal in an individualistic society like the United States. Personality disorders may be more closely tied to cultural expectations than any other kind of mental disorder (Alarco´n, 2005). Some studies have compared the prevalence and symptoms of personality disorders in different countries, and the data suggest that similar problems do exist in cultures outside the United States and Western Europe (Pinto, Dhavale, Nair, Patil, & Dewan, 2000; Yang et al., 2000). Nevertheless, much more information is needed before we can be confident that the DSM-IV-TR system for describing personality disorders is valid in other societies. Two questions are particularly important: (1) in other cultures, what are the personality traits that lead to marked interpersonal difficulties and social or occupational impairment? Are they different from those that have been identified for our own culture? (2) are the diagnostic criteria that are used to define personality disorder syndromes in DSM-IV-TR (and ICD-10) meaningful in other cultures? Currently, these questions remain unanswered, making it important that within a particular society, the experiences of people from cultural and ethnic minorities should be considered carefully before diagnostic decisions are made. Phenomena associated with paranoid personality disorder, including strong feelings of suspicion, alienation, and distrust, illustrate this issue. People who belong to minority groups (and those who are recent immigrants from a different culture) are more likely than members of the majority or dominant culture to hold realistic concerns about potential victimization and exploitation. For example, Black Americans may develop and express mild paranoid tendencies as a way of adapting to ongoing experiences of oppression (Whaley, 2001). Clinicians may erroneously diagnose these conditions as paranoid personality disorder if they do not recognize or understand the cultural experiences in which they are formed. In this particular case, it is obviously important for the clinician to consider the person’s attitudes and beliefs regarding
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members of his or her own family or peer group, as well as the person’s feelings about the community as a whole.
SUMMARY AND CONCLUSIONS Personality disorders in later life can have major personal, familial, and societal implications. Yet, it has been difficult to understand the nature and the prevalence of personality disorders in later life because personality disorders may manifest themselves differently in, say, an 80-year-old than in, say, a 20-year-old. This potentially different presentation in later life raises additional challenges for assessing personality disorders across the lifespandchallenges beyond those for assessing personality disorders in general. Future work is needed to develop measures that are suitable for use with people of all ages and to help characterize the nature of personality disorders across the lifespan and in later life in particular. Only then will we be able to appreciate the changing face of personality disorders in later life, begin to grasp the functional impairment associated with personality disorders in late-life, and more fully understand the developmental nature of personality disorders.
APPENDIX A: MULTI-SOURCE ASSESSMENT OF PERSONALITY PATHOLOGY (MAPP) (Oltmanns & Turkheimer, 2006) Abbreviated Personality Disorder Code SZDdSchizoid Personality Disorder SZTdSchizotypal Personality Disorder PNDdParanoid Personality Disorder BDLdBorderline Personality Disorder NARdNarcissistic Personality Disorder ATSdAntisocial Personality Disorder HSTdHistrionic Personality Disorder OBCdObsessiveeCompulsive Personality Disorder AVDdAvoidant Personality Disorder DEPdDependent Personality Disorder DSM Item Number Correspondence (1 ¼ item 1, 2 ¼ item 2, etc.) Answer ValuesdAre shown by the number choices 0e4 listed after each question. 0 ¼ I am never like this
0% of the time
1 ¼ I am occasionally like this 2 ¼ I am sometimes like this
25% of the time 50% of the time
3 ¼ I am often like this 4 ¼ I am always like this
75% of the time 100% of the time
Scoring of AssessmentdTo obtain a continuous score, simply sum the item scores per disorder. For categorical scores, one must create dichotomous variables using a threshold cutoff score per item. Subthreshold item responses (0 or 1) are assigned a value of 0, and responses of 2 or higher are assigned a value of 1. Dichotomous scores should then be summed and compared with DSM-IV criteria to determine whether a personality disorder is present. Narcissistic personality disorder criterion #8 and criterion #5 have each been split into two MAPP items. When using categorical scores, if EITHER of the two items meets threshold, the criterion should be counted as present.
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1. I prefer to do things alone (SZD2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 2. I am superstitious or believe in mind-reading (SZT2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 3. I feel emotionally unfulfilled or that life is meaningless (BDL7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 4. I find myself daydreaming about power, success and/or the perfect relationship that will be mine someday (NAR2)
0
1
2
3
4
_________________________________________________________________________________________________________________ 5. I am reserved or shy when meeting new people because I worry that I might not measure up (AVD5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 6. I depend on other people to take care of me (DEP2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 7. I am a perfectionist and my perfectionism gets in the way of getting things done (OBC2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 8. I am not interested in close relationships (SZD5) _________________________________________________________________________________________________________________ 9. I have little interest in having a sexual relationship (SZD3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 10. I act or dress in an eccentric (or odd) manner (SZT7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 11. I can be deceitful when I need to be (ATS2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 12. Compared to others, my opinions and preferences change more frequently (BDL3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 13. I am not afraid to show my emotions, and my emotions can change quickly (HST3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 14. Being noticed and/or admired by others is important to me (NAR4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 15. I worry that other people will criticize or reject me (AVD4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 16. I am afraid of being left alone to care for myself (DEP8) 0 1 2 3 4 _________________________________________________________________________________________________________________ 17. I can be rigid and stubborn (OBC8) 0 1 2 3 4 _________________________________________________________________________________________________________________ 18. I have a hard time trusting other people and I often wonder if I can trust my friends (PND2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 19. Close relationships are not important to me (including being part of a family) (SZD1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 20. When I see other people talking, I begin to think that they may be talking about me (SZT1)
0
1
2
3
4
_________________________________________________________________________________________________________________ 21. I like to do things on the fly without planning ahead (ATS3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 22. I expect to be catered to (NAR5a)
0
1
2
3
4
_________________________________________________________________________________________________________________ 23. I have strong mood swings in response to events; I have frequent periods of intense sadness, 0 1 2 3 4 irritation or anxiety (BDL6) _________________________________________________________________________________________________________________ 24. In conversations with other people (such as about my personal beliefs), I usually emphasize my 0 1 2 3 4 personal feelings and impressions and am bored by details (HST5) _________________________________________________________________________________________________________________ 25. It is important to let other people know when they are incompetent and I don’t worry about whether 0 1 2 3 4 they will like me (NAR9) _________________________________________________________________________________________________________________ (Continued)
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26. I am not as much fun or as attractive as other people (AVD6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 27. After I break up with a girlfriend/boyfriend, I am likely to jump into another relationship (DEP7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 28. I am more concerned with saving money than my peers are (OBC7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 29. I do not want to share personal information with other people because I am afraid that it may get into the wrong hands (PND3)
0
1
2
3
4
_________________________________________________________________________________________________________________ 30. I don’t enjoy doing anything (SZD4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 31. I find myself laughing or crying when those around me are not laughing or crying (SZT6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 32. I have failed to do what was expected of me, such as completing my work or paying bills. (Not due to 0 1 2 3 4 circumstances that I could not control) (ATS6) _________________________________________________________________________________________________________________ 33. In close relationships (with friends and family members), I often switch back and forth between loving a person and hating him or her (BDL2)
0
1
2
3
4
_________________________________________________________________________________________________________________ 34. I have threatened to hurt, or kill myself (BDL5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 35. My expressions of emotion are stronger than most others (HST6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 36. It is not my job to listen to, or solve, other people’s problems (NAR7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 37. I do not like to do or try new things because they might be embarrassing (AVD7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 38. I feel scared or uncomfortable when left alone to care for myself (DEP6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 39. I need to do everything myself because no one else will do them right (OBC6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 40. Rather than taking what people say at face value, I try to read between the lines and figure out what 0 1 2 3 4 they really mean (PND4) _________________________________________________________________________________________________________________ 41. I have no close friends (other than family members) (SZT8) 0 1 2 3 4 _________________________________________________________________________________________________________________ 42. Things make sense to me in a way that they may not for other people (SZT4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 43. I get mad easily and often get in fights (ATS4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 44. I seldom feel sorry or guilty for doing things that may have hurt others because I feel that my actions were justified (ATS7)
0
1
2
3
4
_________________________________________________________________________________________________________________ 45. I have sudden, intense outbursts of anger (BDL8) 0 1 2 3 4 _________________________________________________________________________________________________________________ 46. I am easily influenced by other people (suggestible) (HST7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 47. I think other people are jealous of me (NAR8a) 0 1 2 3 4 _________________________________________________________________________________________________________________ 48. I am very controlled or inhibited with close friends because I am afraid people will make fun of me 0 1 2 3 4 (AVD3) _________________________________________________________________________________________________________________ 49. I don’t like to disagree with other people because I fear that they may reject me (DEP3) 0 1 2 3 4 _________________________________________________________________________________________________________________
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50. I can’t throw out old things even if they are of no use to me (OBC5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 51. I am not very good at showing my feelings (SZD7) 0 1 2 3 4 _________________________________________________________________________________________________________________ 52. I repeatedly get in trouble with the police (ATS1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 53. I will do almost anything to keep those that I love from leaving me (BDL1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 54. When I am under stress, I may become paranoid or suspicious of people I usually trust, or have other strange experiences that are hard to explain (MAPP_BDL9)
0
1
2
3
4
_________________________________________________________________________________________________________________ 55. I have gotten hurt in relationships because I thought that the relationship was closer (more intimate) 0 1 2 3 4 than the other person did (HST8) _________________________________________________________________________________________________________________ 56. I expect other people to do what I say (NAR5b) 0 1 2 3 4 _________________________________________________________________________________________________________________ 57. I avoid working in teams because I am afraid someone will criticize or reject me (AVD1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 58. I find it hard to make a simple decision without lots of advice from other people (DEP1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 59. I am afraid to start or do things by myself (DEP4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 60. I am very concerned with details, rules, lists and schedules; I spend a great deal of time getting organized (i.e., making lists, schedules, etc.) (OBC1)
0
1
2
3
4
_________________________________________________________________________________________________________________ 61. I become angry quickly when I am criticized (PND6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 62. I don’t care whether other people praise or criticize me (SZD6) 0 1 2 3 4 _________________________________________________________________________________________________________________ 63. I am nervous around other people because I don’t trust them (SZT9) 0 1 2 3 4 _________________________________________________________________________________________________________________ 64. I am adventurous; I like to do things even if it could be dangerous to me or others (ATS5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 65. I like being the center of attention and feel disappointed when I am not (HST1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 66. I am unwilling to get involved with other people unless I am certain of being liked (AVD2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 67. I will do just about anything to get other people to take care of me (DEP5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 68. My work is more important than spending time with friends and family, and/or having fun (OBC3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 69. I am constantly on the lookout to make sure that other people are not taking advantage, lying to, or 0 1 2 3 4 harming me (PND1) _________________________________________________________________________________________________________________ 70. I see, hear, or experience things differently from the way other people do (SZT3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 71. I am impulsive and have done things that could be dangerous to me (BDL4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 72. I am more flirtatious than other people (HST2) 0 1 2 3 4 _________________________________________________________________________________________________________________ 73. I think that I am much better than most other people (NAR1) 0 1 2 3 4 _________________________________________________________________________________________________________________ 74. Compared to others, I have very high standards when it comes to morals and ethics (OBC4) 0 1 2 3 4 _________________________________________________________________________________________________________________ (Continued)
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75. I have concerns that my sexual partner is not being faithful to me (PND7)
0
1
2
3
4
_________________________________________________________________________________________________________________ 76. I use physical appearance to draw attention to myself (HST4) 0 1 2 3 4 _________________________________________________________________________________________________________________ 77. Because I am so unique, only other special people understand me (NAR3) 0 1 2 3 4 _________________________________________________________________________________________________________________ 78. I am constantly on edge to make sure that other people don’t take advantage of me (SZT5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 79. I will do just about anything to get what I need or think I deserve even if it means having to “step on 0 1 2 3 4 a few toes” (NAR6) _________________________________________________________________________________________________________________ 80. I hold grudges for a long time if I am insulted or injured (PND5) 0 1 2 3 4 _________________________________________________________________________________________________________________ 81. I am jealous of other people (NAR8b)
0
1
2
3
4
_________________________________________________________________________________________________________________
APPENDIX B: GERONTOLOGICAL PERSONALITY DISORDERS SCALE (GPS) (van Alphen, Engelen, Kuin, Hoijtink, & Derksen, 2006) Habitual behavior 1. I don’t like growing older because I become less attractive 2. I often worry about my health 3. I’m often concerned about my memory 4. I hope that others solve my problems 5. I’m often afraid of losing those who care for me, such as members of the family or my partner 6. I’m often taken advantage of by others 7. I find it difficult to fend for myself
(Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No)
Biographical information 1. In my life I’ve been to see the doctor for many vague physical complaints 2. I have sometimes said to my family or friends that I don’t want to live any longer 3. In the past I’ve been admitted to a psychiatric institution or convalescent home because of nerves 4. At important times in my life I’ve had a lot of trouble with nerves, stress or moodiness 5. In the past I’ve already had treatment from a psychiatrist or psychologist 6. I have sometimes tried to end my life 7. At the most I’ve only had one acquaintance or friend in my life 8. In my life I’ve not been very interested in sexual contact 9. In the past I’ve often taken tranquilizers and/or sleeping pills
(Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No) (Yes or No)
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CHAPTER
Assessing Psychosis in Acute and Chronic Mentally Ill Older Adults
5
Colin A. Depp1, Casey Loughran1, Ipsit Vahia1, Victor Molinari2 Department of Psychiatry, University of California, San Diego, CA, USA Department of Aging and Mental Health Disparities, University of South Florida, Tampa, FL, USA 1
2
INTRODUCTION Psychosis is broadly defined as a loss of contact with reality. According to the DSM-IV (APA, 2000), a narrow definition of psychosis encapsulates both delusions and hallucinations. Delusions are persistent beliefs that are not accepted in the context of a person’s social and cultural background, whereas hallucinations are false sensory perceptions that cannot be attributed to sensory distortions. A slightly broader definition of psychosis includes disorganized speech or behavior, such as in catatonia. Until recently little data have been available to inform clinicians about the prevalence, risk factors, and course of psychosis in older people. It is now understood that psychosis is quite common in older people; its prevalence, irrespective of its underlying cause, is about 4e10% in community-dwelling older adults (Henderson et al., 1998; Ostling & Skoog, 2002), and higher among those residing in institutional settings and the oldest adults (e.g., those aged older than 95) (Ostling, Borjesson-Hanson, & Skoog, 2007). In addition, the absolute number of older people who exhibit psychotic symptoms will increase with the aging of the population (Jeste et al., 1999). Psychosis manifests in a variety of conditions in older adults, and it often has devastating effects on individual quality of life and caregiver well-being. Delusions and hallucinations are hallmark features of schizophrenia, but may also be evident in late-life mood disorders with psychotic features. Psychotic symptoms are often present in the dementias; and hallucinations and delusions may occur in the context of delirium due to a medical condition or exposure to a toxin. Therefore, the assessment of psychosis in older adults is often challenging in terms of identifying its underlying etiology, in addition to determining how best to guide treatment planning and services. In this chapter, we describe general considerations in assessing older adults who are suspected of exhibiting psychotic symptoms. We then review the definition, prevalence, and features of common syndromes associated with psychosis; and for each of these syndromes, we provide assessment strategies, illustrative case studies, and wellvalidated instruments for the practitioner.
GENERAL ASSESSMENT CONSIDERATIONS Given that medical conditions, medications, and toxins cause psychotic experiences, the first step in assessment is to rule out these causes. Older adults, particularly those with diminished physical resources due to medical illnesses, are more vulnerable to central nervous system effects. They are thus more likely to experience psychotic symptoms secondary to a medical cause than are younger adults. Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10005-3 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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Often the psychotic symptoms associated with medical illnesses signify a serious medical condition, making initial differential diagnosis all the more important. Medical causes of psychosis include infection, metabolic changes, central nervous system abnormalities, head trauma, deliberate or accidental overdoses, and ingestion of illicit substances. Particularly among older adults in whom the onset of symptoms is recent and there is no history of psychiatric disorder, a complete medical work-up is warranted to rule out these causes. However, it is important to note that older adults with long histories of schizophrenia or other psychotic disorders may have organic causes for exacerbations of psychosis. Therefore it should not be automatically assumed that older adults with long-standing psychotic disorders do not have contributory medical etiologies. Moreover, chronically mentally ill older adults are at risk for poorer medical care, which is likely to exacerbate existing medical conditions (Folsom et al., 2002; Vahia et al., 2008). Biochemical screening should be conducted. Blood work should include checking blood count, electrolytes, metabolic function, urinalysis and urine toxicology. Additionally, hepatic and thyroid panels may be useful. In patients with new onset psychosis without clear cause, computerized tomography or MRI of the brain may be used to rule out intracranial bleeds or neoplasms. Assessment of motor function, sensory function, reflexes, coordination and gait can aid in determining whether acute brain insults precipitated presenting symptoms (Richards & Gurr, 2000). A thorough psychiatric and medical history is necessary when new or exacerbated psychotic symptoms are present, which would include obtaining collateral information from medical records and proxy informants, recording all the medications that a person is taking, and having direct communication with primary care providers (Jones, Vahia, Cohen, Hindi, & Nurhussein, 2009). After establishing rapport, patients should be asked if they have been experiencing any unusual sensations, hearing voices that others cannot hear, or seeing things that are not there. They may also be asked whether they have held any beliefs that others might not understand or believe. In many cases, the responses to these questions may be met with denial of symptoms and insistence that the phenomena experienced are real. In particular, cognitively impaired older adults may not be able to verbalize their experiences. The role of proxy informants, such as family members, is thus essential. Family members may want to disclose information about their relative’s hallucinations or delusions in private so as not to alter trust with, or to offend, the patient. In nursing home or other institutional settings, staff observations are particularly valuable in characterizing the nature of psychosis and its contextual influences. In addition to the history of the symptoms, clinicians should also inquire about recent changes in social or occupational behavior, such as withdrawal from usual activities, as well as any changes in personal hygiene and habits. To aid in identifying whether medical causes contribute to the etiology of psychotic symptoms, specification of the time course of symptoms should be a central goal of the evaluation, establishing whether psychosis emerged in the context of a trial of a new medication or emergent medical conditions. A thorough review of medications and identification of potential drugedrug interactions should be undertaken, as well as an indication of how and when the medication(s) are taken so as to identify potential over/underdoses. History of psychiatric treatment, such as whether previous psychiatric symptoms occurred in the context of medical conditions or treatments, should be gathered. Another factor to consider in regard to identifying contributors to psychosis is the degree of social isolation; particularly among homebound elderly people, isolation is a risk factor for psychosis (Richards & Gurr, 2000). Severe hearing loss may also produce experiences that may be similar to auditory hallucinations (Stein & Thienhaus, 1993). In addition to the course and context of symptoms, the phenomenology of symptoms can provide clues as to whether psychotic symptoms may derive from medical causes. Key distinctions among hallucinations are the modality (i.e., auditory, visual, tactile, olfactory), frequency, and intensity. Delusions can be sub-divided by their content (e.g., delusions of reference, control, persecutory, paranoid,
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grandiose, somatic, and jealousy/guilt) as well as the degree to which they are bizarre (could not happen) or non-bizarre (represent extensions of reality). Another factor to assess is insight into the origin of delusions and hallucinations, as well as amenability of delusional beliefs to alternative explanations. Another common distinction, for which evidence is mixed, is the presence of Schneiderian “first rank” symptoms which are thought to be specific to schizophrenia (i.e., voices heard arguing with each other, commenting on behavior, removal of thoughts or insertion of thoughts). The presence of visual, tactile, and olfactory hallucinations is more suggestive of medical causes, whereas auditory hallucinations are more common in psychiatric illnesses. Delusions that are simple, more transient, and involve misidentification of family members are more suggestive of dementia, whereas long-held delusions with intricate themes are more consistent with schizophrenia. Psychosis co-occurring with cognitive impairment, and in particular a waxing and waning state of consciousness and orientation, is often indicative of delirium. Another general consideration in assessing people with a long history of psychosis is that, while distressing, hallucinations and delusions can be less debilitating than concurrent symptoms of depression (Diwan et al., 2007) and cognitive impairments. Therefore, it should not be assumed that psychotic symptoms are the primary problem experienced by the patient. For example, there is some evidence to suggest that, because psychotic symptoms tend to “stand out,” the presence of comorbid medical problems can be overlooked in patients with schizophrenia (Brown, Barraclough, & Inskip, 2000). Finally, the patient and their caregivers’ approach toward psychotic symptoms is important to assess in order to formulate a treatment plan. Whether or not patients are able to consider alternative explanations of their symptoms, and have insight into their illness, can aid in determining the prognosis for rehabilitation. Older adults with long-standing psychotic symptoms often have developed a number of coping skills to aid in dealing with delusions and hallucinations (e.g., distraction, “talking back” to the voices). How family members react to psychotic symptoms, such as whether they argue with the patient or whether they are embarrassed by their family member’s illness, can shed light on ways to reduce the impact of psychosis on the family. Indeed, highly emotionally expressive family members have long been associated with relapse in patients with schizophrenia (Brown, Monck, Carstairs, & Wing, 1962; Butzloff & Hooley, 1998) . In sum, psychosis is a symptom that occurs in many conditions, and medical causes need to be ruled out prior to the diagnosis of a psychiatric disorder. The phenomenology of hallucinations and delusions differs among illnesses and may provide an indication of whether the underlying cause stems from a medical condition or from the psychiatric disorders. A careful evaluation that integrates multiple sources of information can aid in determining the underlying cause of psychosis and point toward targets for treatment plans.
SCHIZOPHRENIA AND DELUSIONAL DISORDERS Definition, Prevalence and Course The disorder most classically associated with psychosis is schizophrenia. The DSM-IV criteria for schizophrenia require at least two of the following: (1) hallucinations; (2) delusions; (3) disorganized speech; (4) grossly disorganized or catatonic behavior; or (5) negative symptoms which include alogia, anhedonia, social withdrawal, or apathy. These symptoms must be continuously present for at least one month, must not be attributable to medical causes, and must also produce social and/or occupational impairment. Other primary psychotic disorders include delusional disorder, which requires the presence of non-bizarre delusions over the course of at least one month. Delusional disorder is characterized by focal delusions that do not impair functioning outside of that affected by the delusion, with no evidence of hallucinations or negative symptoms. Schizoaffective disorder requires fulfillment of criteria for schizophrenia as well as a mood disorder, with evidence for the existence of the psychotic symptoms in the absence of mood disorder.
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Historically, schizophrenia with onset in old age has had many different anecdotal characterizations including “late paraphrenia” and “dementia praecox” (Palmer, McClure, & Jeste, 2001), with little empirical data available to describe this disorder until recently. Even now, only 1% of the literature on schizophrenia focuses on older adults (Vahia et al., 2007). The prevalence of schizophrenia in older persons varies somewhat based on the criteria used, with estimates for current diagnosis as low as 0.2% in the Epidemiological Catchment Area studies (Robins et al., 1984) and 0.06% in a British study (Copeland et al., 1998). However, given that many population-based estimates exclude older adults in supported living environments, the actual prevalence is likely around 0.6 to 1% (Cohen, 2003). Delusional disorder is much less common, with estimated prevalence about 0.03%. Although more men than women are diagnosed with schizophrenia at younger ages, the gender ratio reverses in older age. Approximately 85% of older adults with schizophrenia reside in the community, with the remainder in institutional settings. Most older adults with schizophrenia experience the onset of the illness in their second or third decade of life, and thus have lived with the illness for many years. Even with the increased mortality experienced by people with schizophrenia, particularly due to suicide or homicide, the absolute number of people living to older age with schizophrenia is expected to increase dramatically because of the aging of the population (Jeste et al., 1999). Onset prior to age 40 is referred to as “early-onset” schizophrenia, which accounts for approximately 80% of patients with schizophrenia. In contrast, the age of onset of delusional disorder is later, on average, than that in schizophreniadtypically occurring in middle age (between ages 40 and 60). Schizophrenia with onset after age 60 is referred to as VeryLate-Onset Schizophrenia-Like Psychosis (Howard, Rabins, Seeman, & Jeste, 2000). The literature includes a case report of schizophrenia with onset at age 100 (Cervantes, Rabins, & Slavney, 2006). Over the years, researchers have explored the differences in clinical presentation and prognosis between individuals with early- versus late-onset schizophrenia. In these studies, late-onset schizophrenia is traditionally defined as having an onset of schizophrenia after the age of 40. Approximately 23% of patients experience onset after age 40 and 7% of older adults with schizophrenia have experienced the onset of illness after age 50 (Harris & Jeste, 1988). Comparing the presentation between earlyand late-onset patients, there appear to be more similarities than differences (Palmer et al., 2001). Nevertheless, late-onset patients present somewhat unique features from their early-onset counterparts and, overall, late-onset patients have a somewhat better prognosis. Those with late-onset schizophrenia are more likely to be of the paranoid type and more likely to be women (Jeste et al., 1995). Late-onset patients may be less likely to display negative symptoms, and the neuropsychological profile is that of less impairment in executive functions and learning compared with early-onset patients. Additionally, because they experienced a longer symptom-free life, late-onset patients often have achieved more functional milestones, with better marriage and employment histories (Howard et al., 2000). Early characterization of the course of late-life schizophrenia was that of progressive deterioration. The pre-eminent psychiatrist Emil Kraeplin referred to schizophrenia in older age as “dementia praecox” (Kraeplelin, 1919). However, long-term follow-up of early-onset patients suggests that, on average, general psychopathology and functional impairment are stable into later life (Jobe & Harrow, 2005). The first 5 to 10 years after the onset of schizophrenia are associated with the sharpest declines in functioning, with general evidence for stability thereafter. Cross-sectional data from middle-aged and older outpatients with schizophrenia suggests that the severity of positive symptoms tends to lessen with age (Jeste et al., 2003). Cognitive abilities remain stable in older adults with schizophrenia for up to 10 years, with a rate of decline similar to that seen in normal aging (Heaton et al., 2001). Some of these observed improvements are influenced by the “survivor” effect, i.e., mortality rates may be higher for more virulent early-onset cases that are at greater risk for self-inflicted injury or greater mortality from other causes. Nevertheless, the few existing long-term cohort studies suggest that improvements may occur, with some patients even attaining “sustained remission” (Auslander & Jeste, 2004; Jobe & Harrow, 2005).
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Examining the predictors of positive or negative mental health trajectories, it does appear that worse prognosis in later life is associated with more severe negative symptoms and longer duration of illness. In addition, certain subsets of patients, particularly long-term institutionalized patients, may experience declines in functioning due to their impoverished living conditions (Harvey et al., 1999).
Culture and Diversity Issues The core symptoms of schizophrenia appear to be consistent across ethnicities and cultures, but there are some key sociocultural considerations. Older people who are ethnic minorities and who have severe mental illnesses may experience a “triple stigma,” facing ageism, racism, and biases against individuals with mental illnesses. In some instances, suspected paranoia regarding persecution may be based on actual racial prejudice experienced by the patient. There is also a well-known tendency for African Americans to be diagnosed with schizophrenia rather than bipolar disorder or other mood disorders: it is unclear if this tendency is due to self-selection, actual ethnic differences, or clinician biases (Minsky, Vega, Miskimen, Gara, & Escobar, 2003). Language barriers among patients whose first language is not English may complicate the clinical process of eliciting the nature and history of suspected psychotic symptomsdobtaining additional information from family members is often needed. Determination of whether the patient’s unusual experiences are ethically or religiously sanctioned requires cultural competence of the clinician. In addition, older Latinos with schizophrenia appear less likely to utilize mental health services (Vega & Lopez, 2001). In turn, Latinos with schizophrenia are more likely to live with family members who may be more available to provide support, and prognosis may be improved as a result.
Assessment Measures The first portion of the assessment of older people with suspected schizophrenia would entail the steps described in the early part of this chapter, with regard to ruling out underlying medical causes and contributors by gathering information from multiple sources. The next step is to confirm the diagnosis of schizophrenia and to measure its severity and its impact. Using structured clinical interviews, such as the Structured Clinical Interview for the DSM-IV Interview (SCID; Spitzer, Gibbon, & Williams, 1995), can aid in increasing the rigor in establishing current and lifetime diagnoses. The SCID can take anywhere from 30 minutes to three hours to administer, depending on which modules are included and the patient’s history. A briefer alternative to the SCID for a psychiatric diagnostic interview is the Mini International Neuropsychiatric Interview (MINI; Sheehan et al., 1998), which takes approximately 30 minutes to administer. Once a diagnosis of late-life schizophrenia and delusional disorder is obtained, domains that need ongoing clinical assessment include: (1) psychopathologic symptoms; (2) cognitive ability; (3) functional capacity/community functioning; and (4) medication side effects and adherence. Below we present useful measures in each of these categories. The most common form of assessment used in older adults with severe mental illness is the clinician-rated instrument, but there are also performancebased, observational, and self-reported measures representing these domains. The use of standardized and validated instruments can aid in gauging the overall severity of symptoms relative to established criteria, in assuring the coverage of all of the symptom clusters experienced by the patient, and in adding prognostic precision to the estimation of treatment effects.
Psychopathologic Symptoms Positive and Negative Syndrome Scale (PANSS) is among the best-validated instruments for assessing positive, negative, and general psychopathology associated with schizophrenia. The PANSS is
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a standardized, clinical interview that rates the presence and severity of positive and negative symptoms, as well as general psychopathology for people with schizophrenia within the past week. Of the 30 items, seven are positive symptoms, seven are negative symptoms, and 16 are general psychopathology symptoms. Symptom severity for each item is rated according to which anchoring points in the 7-point scale (1 ¼ absent; 7 ¼ extreme) best describe the presentation of the symptom (Kay, Fiszbein, & Opler, 1987). The Brief Psychiatric Rating Scale (BPRS) is an older, commonly used clinician-rated measure that is somewhat broader in symptom coverage. The BPRS was initially designed to evaluate pharmacologic treatment response in older adults. There are 18 symptom constructs assessed during this interview, encompassing various symptoms of psychosis, depression, and anxiety. Each symptom question is rated on a 7-point scale (1 ¼ not present; 7 ¼ extremely severe). The scoring criteria for each symptom are highly detailed; and consequently, the assessment has solid inter-rater reliability. The information gathered is based on the clinician’s observation and the individuals’ self-report of the past two to three days (Overall, 1962).
Cognitive Impairment In addition to psychotic symptoms, the assessment of cognitive functioning is essential given its role in magnifying functional impairment. The assessment of cognition is discussed in greater depth in this book’s section on cognition. There has been much recent work in the realm of neuropsychological assessment in schizophrenia, prominently the U.S. National Institute of Mental Health’s Measurement and Treatment Research to Improve Cognition in Schizophrenia (MATRICS) initiative, which has identified a core battery of tests for the measurement of cognitive abilities in schizophrenia (Green & Nuechterlein, 2004). Although a full neuropsychological assessment such as the MATRICS battery will provide a more thorough indication of strengths and weakness in differing cognitive abilities, very often clinicians are called upon to obtain a global estimate of cognitive performance in older adults with psychotic disorders who have suspected cognitive impairment. Two brief measures of cognitive ability that that have been used in late-life schizophrenia are the Mattis Dementia Rating Scale (DRS) and the Repeatable Battery for the Assessment of Neuropsychological Status (RBANS). The DRS takes approximately 15e20 minutes to administer and yields a total score (0e144) that reflects level of overall cognitive functioning, and five subscale scores that measure attention, initiation/perseveration, construction, conceptualization, and memory (Mattis, 1988). The RBANS takes an average 30 minutes to administer, measuring five subscales of attention, immediate memory, visuospatial constructional skills, delayed memory, and language. The RBANS is particularly useful for longitudinal assessments because it has alternate forms that diminish learning effects of repeated testing (Randolph, Tierney, Mohr, & Chase, 1998).
Functional Abilities The assessment of functional abilities is often essential in determining the level of care an individual with schizophrenia may require, as well as how the illness and associated factors impact patients’ daily lives. There is no gold standard definition of functional dependence or independence, and no single functional instrument that covers all functional domains. Functional assessment separates what an individual does (actual performance) from what an individual can do (capacity). Different assessment strategies are required for performance and capacity: assessing real world functioning provides an indication of disability, while functional capacity assessment allows the clinician to observe functional abilities under optimized conditions. Because functional ability varies by context, assessment modality, and state-level factors (e.g., pain, fatigue), attaining an accurate estimation of functional status should include self- and informant-ratings, as well as performance-based assessment.
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The Social-Adaptive Functioning Evaluation (SAFE) is a clinician-rated measure covering instrumental, social-interpersonal, and life-skills functioning, and was specifically designed and validated among older people with severe mental illness. This assessment is unique in its sensitivity to age-related impairments and is commonly used in inpatient and chronically institutionalized populations. There are 19 items, such as “money management” and “social engagement,” that are rated on a scale of 0 (no impairment) to 4 (severe impairment). Ratings are restricted to functioning in the preceding month. Ratings are acquired through patient interaction, observation, and caregiver interviews (Harvey et al., 1997). The Independent Living Skills Survey (ILSS) is a measure to test basic functional living skills of patients with severe and persistent mental illness. There are two versions: an informant-rated version (ILSS-I) and a self-report version (ILSS-SR). The ILSS-I consists of 103 items that assess 12 areas of basic community living skills. The ILSS-SR consists of 70 items, which cover 10 different domains of functioning: personal hygiene; appearance and care of clothing; care of personal possessions and living space; food preparation; care of personal health and safety; money management; transportation; leisure and recreational activities; job seeking; and job maintenance. Participants are asked to indicate “yes” or “no” to whether or not they had performed a specific task in the past month. The ILSS-SR takes approximately 20e30 minutes to complete (Wallace, Liberman, Tauber, & Wallace, 2000). The UCSD Performance-Based Skills Assessment (UPSA) assesses functional capacity in five domains: comprehension/planning; finance; transportation; and household management. The UPSA involves role-playing tasks, such as navigating a bus route, balancing a checkbook, or rescheduling an appointment. Each subscale is scored on a scale of 0e20 and a total score (0e100) is provided from the sum of these sub-scores. The UPSA has excellent inter-rater reliability and has been empirically validated (Patterson, Goldman, McKibbin, Hughs, & Jeste, 2001). Another performance-based measure, the Medication Management Ability Assessment (MMAA), focuses solely on prescription medication management. This role-playing task is modeled on prescription medication regimens, similar in complexity to those an older adult might encounter. The MMAA has excellent testeretest reliability and good construct validity, with scores significantly correlated with two other performance-based measures of functionality (Patterson et al., 2002).
Medication Side Effects and Adherence Finally, medication side effects need to be assessed in older patients with schizophrenia. Antipsychotics (the mainstay of treatment) have side effects that require routine monitoringdolder age is a primary risk factor for these side effects. First generation antipsychotics (e.g., haloperidol) carry a risk of inducing tardive dyskenesia (TD), which involves involuntary movements of the face, trunk, and limbs. The incidence of TD in patients treated with first generation antipsychotics is high; in one prospective study it was 5%, 34%, and 53% after one, two, and three years respectively of cumulative antipsychotic treatment (Woerner, Alvir, Saltz, Lieberman, & Kane, 1998). Second generation antipsychotics are less likely to produce TD, but are associated with significant metabolic changes including diabetes, hypertension, and weight gain (Newcomer, 2007). These side effects are of concern in that they may increase the risk of cerebrovascular disease and cardiovascular mortality. There are clinician-rated scales for assessing TD, which include the AIMS Scale (Lane, Glazer, Hansen, Berman, & Kramer, 1985). The monitoring of metabolic side effects of second generation antipsychotics includes regular assessment of serum metabolic profile, lipid profiles, blood pressure, and body mass index (Marder et al., 2004). The routine assessment of older people with psychotic disorders should include an assessment of medication adherence as well as side effects. In people with bipolar disorder or schizophrenia, the rate of non-adherence is quite high (approximately 40%), and exacerbations of psychosis can frequently occur after episodes of non-adherence (Lacro, Dunn, Dolder, Leckband, & Jeste, 2002). In older adults, non-adherence is more likely to be unintentional, such as via forgetting. Self-report scales of
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adherence exist (Dolder et al., 2004), but accuracy of self-report may be diminished in older adults with cognitive impairment. Other measures such as pill counts, blood levels of medications, and pharmacy records can be used to provide a more objective measure of adherence.
Case Study 1 Elsa is a 68-year-old woman who lives with her daughter in an apartment. Elsa’s daughter brought her to the emergency department after her mother had become increasingly suspicious of the neighbors living upstairs, believing that these neighbors were putting “mind control gas” in the air vents and attempting to poison Elsa. She believed these neighbors were part of a satanic cult. Her paranoia had increased over the previous week, and she had begun to plug the vents with paper towels, creating concern for a fire hazard. In the previous week, Elsa had eaten only sporadically and had refused to take her medications. The daughter finally decided to bring her mother in to the emergency department for an evaluation after she witnessed her mother shouting into the vents, cursing at her neighbors. From separate interviews with Elsa and her daughter, it was revealed that Elsa had been diagnosed with schizophrenia at age 34 and had spent several months in different psychiatric hospitals over the subsequent 10 years. From middle age onward, Elsa had lived initially with her husband (her primary caretaker) and, since his death five years before, she had lived with her daughter. Elsa had seen a psychiatrist who prescribed antipsychotic medications and she had not worked regularly since she was first diagnosed. Medically, she had a stroke three years before, which had left her with a slight drop on the left side of her face, some generalized muscle weakness, and some decline in shortterm memory. Functionally, Elsa’s daughter assisted Elsa in nearly all instrumental activities of daily living, including medication management, and expressed feeling distress and being overwhelmed by her caregiving responsibilities. In addition to a second generation antipsychotic medication, she was prescribed cardiovascular medications. During evaluation, Elsa was noted to appear anxious (i.e., wringing her hands), and guarded in her attitude. After initially denying any problems, Elsa then endorsed beliefs that her neighbors had been trying to harm her; although she did not admit that she had ever been diagnosed with schizophrenia. She scored a 31 on the PANSS, which revealed that she had severe positive symptoms but mild negative symptoms. Brief assessment of cognitive status with the Dementia Rating Scale revealed that Elsa was generally cognitively intact. Laboratory work-up was indicative of a urinary tract infection (UTI). CT of the head revealed a right-sided lacunar infarction consistent with her stroke five years ago, diffuse white matter changes that were consistent with age-related change, and no new concerning changes. After a long discussion with her daughter, Elsa was willing to be admitted to a psychiatric hospital for a medication evaluation and treatment of her UTI with antibiotics. After five days in which her antipsychotic medications were restarted, Elsa was less anxious and no longer expressed certainty about her neighbor’s ill intentions, although she continued to harbor suspicions. She had better insight into her diagnosis of schizophrenia. No auditory hallucinations were observed during hospitalization. At discharge, her symptoms of UTI had remitted and her PANSS score had dropped to 14. Part of the discharge plan was for Elsa to attend a day treatment group at the community mental health center, aimed at providing social engagement for Elsa and allowing Elsa’s daughter respite from care.
BIPOLAR DISORDER AND PSYCHOTIC DEPRESSION Definition, Prevalence and Course Mood disorders at times present with psychotic features, and include bipolar disorder and depression with psychotic features. There has been a long held dichotomy between schizophrenia and mood disorders, with Emil Kraeplin differentiating “dementia praecox” from “manic depression” by the presence of psychosis in the former and mood symptoms in the latter. However, more recent conceptualizations, stemming from the evidence of shared genetic vulnerabilities between mood and psychotic disorders, challenge the validity of the dichotomy between mood and psychotic disorders. Psychotic disorders including schizophrenia may thus be best viewed as part of a continuum that includes bipolar disorder and other mood disorders (Craddock & Owen, 2005). The classification of psychotic disorders is evolving. The current approach, based on DSM-IV, differentiates between diagnoses of schizophrenia, schizoaffective disorder, and mood disorder based
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on the chronological sequence and duration of symptoms, and overlap of psychosis and mood symptoms. To meet criteria for a mood disorder with psychotic features, the DSM-IV specifies that psychotic symptoms must occur in the presence of a mood disorderdif the patient has delusions or hallucinations for two weeks in the absence of a mood disorder then the diagnosis would be schizoaffective disorder or schizophrenia. Most commonly, psychotic mood disorders include psychotic symptoms that are mood congruent. Depressive delusions include themes of guilt, hypochondriasis, nihilism, persecution, or jealousy. In manic episodes, the content may be grandiose. However, psychotic symptoms do not need to be mood congruent for a person to meet criteria for a mood disorder with psychotic features, so long as the symptoms occur in the context of a mood episode. The presence of depression in community-dwelling older adults is approximately 1e4%, with higher rates in primary care and higher still in specialty mental health settings. Among older adults with depression, the exact prevalence of depression with psychotic features in late-life is unknown, but, in the general population, about 20% of people with major depression have psychotic features. Bipolar disorder is less common than major depression in late-life, but may be present in up to 10% of geriatric psychiatric inpatients and outpatients. In a review of the phenomenology of older adults with bipolar disorder, 60% of cases had psychotic symptoms (Depp & Jeste, 2004). Delusions are more common than hallucinations in mood disorders with psychotic features, and, when hallucinations are present, delusions generally are also found (Meyers, 1995). Psychotic symptoms generally predict a worse prognosis in affective disorders. In mixed-age studies, patients with psychotic depression have more frequent relapses and may be at risk for greater residual impairment in functioning after symptoms remit. There is some evidence that suicide risk may be increased among depressed people with psychotic features, but studies are inconsistent. In older adults, there is consistent evidence that cognitive impairment may accompany depression or bipolar disorder, with or without psychosis. These deficits may not be as severe as those associated with schizophrenia, but they are associated with substantial disability. In mixed-age studies of patients with depression or bipolar disorder, psychotic features are associated with a higher risk for cognitive impairment. A number of studies have suggested that dysregulation in the hypothalamicepituitaryeadrenal (HPA) axis may be more evident in psychotic than non-psychotic depression, leading to speculation of a causal role of HPA in psychotic depression (Keller et al., 2006).
Assessment Measures The assessment of psychosis in the context of mood disorders would include the same procedures and instruments as described for schizophrenia above, covering psychotic symptoms, cognitive functioning, and functional capacity/community functioning. Additional assessment of mood symptoms, covered in the first chapter in this book, would include depression symptom severity measures (e.g., the Hamilton Depression Rating Scale) and manic symptoms (e.g., the Young Mania Rating Scale). Given that there is a high risk of suicide in older adults with mood disorders in general, and suicide risk may be increased among those with psychotic features, suicide screening should be routinely undertaken. In older adults with psychosis, asking about the presence of command hallucinations should be included in suicide assessment.
ASSESSMENT OF PSYCHOSIS IN DEMENTIA Definition, Prevalence, and Course Psychotic symptoms frequently occur among older adults with Alzheimer’s disease (AD) and other dementias. In fact, the dementias account for the largest proportion of older adults’ cases of psychosis.
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Psychotic symptoms in dementia are generally described as part of a constellation of neuropsychiatric symptoms (i.e., non-cognitive symptoms), which also include emotional disturbances (depression, anxiety, irritability, apathy) and behavioral problems (aggression, withdrawal). Psychosis often increases the risk of other behavioral problems; for example, the presence of a persistent delusion may be associated with aggression, or misidentification of the family home may subsequently lead to wandering. The DSM-IV does not specifically recognize “psychotic features” of Alzheimer’s disease or other dementias, lumping psychosis with other neuropsychiatric symptoms under the modifier “with behavioral disturbances.” Because so many with AD exhibit such behavioral disturbances, and because the symptoms are quite diffuse, future revisions of the DSM may include greater specification of neuropsychiatric symptoms (Jeste, Meeks, Kim, & Zubenko, 2006). Psychosis in AD was initially described by Alois Alzheimer in 1907. It is now known that psychosis in AD is biologically distinct from psychosis due to schizophrenia; however, due to the overlap in presentation between these conditions, differential diagnosis can be difficult. Jeste and Finkel (2000) have proposed criteria aimed at identifying whether psychosis is due to dementia rather than schizophrenia, delirium, or other conditions. Table 5.1 displays some heuristic differences between psychosis exhibited in AD and schizophrenia (Jeste & Finkel, 2000). To meet the proposed criteria for psychosis in AD, patients must meet criteria for AD, and they must have exhibited visual or auditory hallucinations or delusions for one month or longer. These symptoms must not have been present continuously prior to the onset of dementia, and the patient must never have met criteria for a psychotic disorder (e.g., schizophrenia, mood disorder with psychotic features). Neurobiological studies, as well as differences in presentation between dementia with psychosis and schizophrenia, support the distinction between these syndromes. Most of what is known about the prevalence of psychosis in dementia is via patients with Alzheimer’s disease, since AD accounts for the largest proportion of dementias. Approximately 40% of people with dementia exhibit psychotic symptoms, although the range in prevalence varies widely across studies. Delusions appear to be more common that hallucinations in AD. In one review of 55 studies reporting a prevalence of psychosis in AD, 36% of patients had delusions and 18% exhibited hallucinations (Ropacki & Jeste, 2005). The cumulative incidence of psychosis in AD in one study was 20% at 1 year, 36% at 2 years, 50% at 3 years, and 51% at 4 years (Paulson et al., 2000). Psychosis is also common in Parkinson’s disease, with about 15e20% of patients exhibiting hallucinations or delusions (Werner, 2003). Some evidence suggests that hallucinations may be more common than delusions in Parkinson’s disease. Visual hallucinations are very common in dementia with
Table 5.1 Psychosis of Alzheimer’s Disease versus Late-Life Schizophrenia Prevalence in adults older than age 65 Bizarre delusions Misidentifications Hallucinations First rank symptoms Suicide Past history Remission Need for maintenance Antipsychotic doses
Alzheimer’s Disease
Schizophrenia
1.5 % Rare Common Mostly visual Rare Rare Rare Frequent Rare Low
70, transfer from a nursing home, visual or hearing impairment, history of depression, dementia, stroke, epilepsy, or use of psychoactive drugs. Acute conditions may include drug overdoses or illicit drug use, metabolic issues, sepsis, or serum urea nitrogen. Iatrogenic/environmental factors may include medications (particularly anticholinergics, sedatives, and analgesics), tube feeding, or catheter use (Devlin et al., 2007). The severity of delirium is another important risk factor that warrants attention. Voyer, McCusker, Cole, St-Jacques, and Khomenko (2007) investigated whether the factors associated with delirium varied according to the severity of the delirium experienced among new long-term care admissions. Upon admission, patients were screened for delirium with the CAM, and the severity of delirium symptoms was determined by the Delirium Index. Of the 71 delirious older patients, 32 (45.1%) had moderateesevere delirium while 39 (54.9%) presented with mild delirium. A significant positive relationship was observed between premorbid cognitive impairment and delirium severity. Additional factors were significantly associated with delirium, including low Mini-Mental State Examination (MMSE) scores and the presence of severe illness at the time of admission, as well as low functional autonomy. Interestingly, older patients suffering from mild delirium used significantly more drugs, notably narcotics, than those with moderateesevere delirium. However, stepwise regression revealed that the MMSE score at admission and narcotic medication use were the factors most strongly associated with the severity of delirium symptoms. Given the cross-sectional design of this study, it is difficult to ascertain whether the drug precipitated the delirium or if the physician prescribed a drug in response to behavioral symptoms of delirium. This might, in part, account for the lower number of drugs used by patients displaying moderateesevere symptoms of delirium. The authors concluded that factors associated with moderateesevere delirium were different from those associated with mild delirium and that, as would be expected, moderateesevere delirium is associated with poorer outcomes (Voyer, et al., 2007). In addition to the aforementioned risk factors, it is important to consider the impact of psychological health on delirium. McAvay et al. (2007) conducted a prospective cohort study of patients 70 and older who were at intermediate or high risk for delirium and were not taking antidepressants at hospital admission. They found that patients who developed delirium reported
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a higher rate of depressive symptoms than those without. After controlling for measures of physical and mental health, depressive symptoms, including dysphoric mood and hopelessness, were predictive of incident delirium. In contrast, symptoms of withdrawal, apathy, and vigor were not associated with delirium.
CLINICAL FEATURES The core diagnostic features of delirium include fluctuating alteration in consciousness and a change in cognition or a perceptual disturbance (APA, 2000). However, the manifestation of delirium can be rather idiosyncratic. The heterogenous presentation increases the complexity of symptom recognition. Lipowski (1989) described several types of delirium based on psychomotor behavior and level of arousal: hypoactive; hyperactive; and mixed. The typical elderly patient with delirium is the hypoactive type, presenting as quietly confused, disoriented, lethargic, mildly anxious, and perplexed (Inouye, 1994). In the palliative care setting, hypoactive delirium is most common and it is frequently misdiagnosed as depression or severe fatigue (Spiller & Keen, 2006). For example, in a hospice setting, 29 out of 100 acute admissions were found to have delirium; 86% of these had the hypoactive subtype. The hyperactive type who is overtly agitated and floridly hallucinating is less common, though often more easily recognized by clinicians. For instance, Francis, Martin, and Kapoor (1990) found that disruptive behaviors and hallucinations occurred in less than half of their elderly patients with delirium. Incontinence was the most common behavioral marker for this group of patients. Individuals with a mixed presentation vacillate between hypo- and hyper-psychomotor symptom expression. There is evidence suggesting that the subtypes of delirium may be related to different etiologies and may have different treatment responses. For instance, hypoactive delirium has most commonly been associated with hypoxia, metabolic disturbances, and hepatic encephalopathies, and a higher mortality risk than the hyperactive subtype (Meagher, O’Hanlon, O’Mahony, Casey, & Trzepacz, 2000). Hyperactive delirium is often associated with alcohol and drug withdrawal or drug intoxication. The onset of delirium is typically rapid and may include a variety of neuropsychiatric symptoms, which typically increase at night. A patient may have fluctuating levels of awareness and orientation, impaired memory, and poor attention. There are typically disturbances in the sleepewake cycle and activity level (Brown & Boyle, 2002). The patient may report symptoms of uneasiness, headache, irritability, fatigue, restlessness, anxiety, or depression (Beresin, 1988). Also, perceptual distortions and visual hallucinations are a common feature of delirium. Visual hallucinations are more common than auditory hallucinations (Trzepacz, 1996). Neurologic abnormalities may include tremors, asterixis, myoclonus, frontal release signs, and changes in muscle tone. Emotional reactions typically involve fear and depression.
Outcome Studies Patients who develop delirium during their hospital stay have a poorer prognosis. An association has been found between delirium and functional decline, increased hospital stay, and higher mortality rates (Dasgupta & Dumbrell, 2006; Inouye, 2006; van Zyl & Seitz, 2006;). According to Siddiqi et al. (2006), death rates have ranged from 14.5e37%. McCusker, Cole, Abrahamowicz, Primeau, and Belzile (2002) found that compared with older patients with mild delirium, those with severe delirium, as defined by the Delirium Index, had a greater likelihood of dying within 12 months. As previously indicated, a patient’s subtype of delirium may be related to outcome. In a prospective study of patients aged 65 and older who were hospitalized for acute hip fracture surgery, Marcantonio,
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Ta, Duthie, and Resnick (2002) found that patients with subsyndromal delirium had outcomes similar to those with mild delirium, suggesting that the presence of delirium symptoms may be more important than the DSM-IV-TR diagnosis of delirium, per se. Pure hypoactive delirium accounted for over 70% of all cases, although delirium with hyperactive features tended to be more severe, was more likely to be treated with sedating medications, and in general had poorer outcomes. Even after adjusting for the severity of delirium, hyperactivity was an independent correlate of nursing home placement or death one month after surgery. With regard to the course of delirium, McAvay et al. (2006) found that of 433 study patients, 24 (5.5%) had delirium at discharge, 31 (7.2%) had delirium that resolved during hospitalization, and 378 (87.3%) were never delirious. The average length of hospital stay was 15.4 days for patients discharged delirious, followed by 14.3 days for those with delirium that resolved, and 7.3 days for those who were never delirious. After one year of follow-up, 20 of 24 patients (83.3%) discharged with delirium, the delirium in 21 of 31 patients (67.7%) was resolved, and 157 of 378 patients (41.5%) who were never delirious had been placed in a nursing home or had died. The authors concluded that delirium at discharge is associated with a high rate of nursing home placement and mortality over a one-year follow-up period. This finding is consistent with previous research (e.g., Adamis, Treloar, Martin, & MacDonald, 2006).
Neuropsychological Test Findings The psychopathology of delirium remains “remarkably under-studied” (Bhat & Rockwood 2007, p. 1167). Although cognitive impairment is known to occur, characterization of its neuropsychological profile is lacking (Brown et al., 2009). Patients with delirium often demonstrate gross impairments of attentional functioning and a high frequency of psychiatric perceptual disturbances (Meagher et al., 2007). Often the Mini-Mental State Examination (MMSE) is used as a cognitive screener in studies of delirious patients. Most studies find that the total score of a delirious patient is similar to scores received by dementia patients. However, the MMSE score typically fluctuates significantly during the hospital course, which does not occur in those patients with dementia only (Francis et al., 1990). Lower MMSE scores and lowered performance on tasks of executive functioning, attention, and processing speed suggest a link between delirium and long-term cognitive impairment (Fann, Roth-Roemer, Katon, & Syrjala, 2007; McCusker, Cole, & Dendukuri, 2001). However, it is important to emphasize that the MMSE is a cognitive screener, and is not specifically designed for the detection of delirium, a concern that will be addressed below in the review of frequently employed instruments used to measure delirium. Brown et al. (2009) explored the perceptual differences found in individuals with delirium. They hypothesize that patients with delirium may have deficits in the cognitive systems that underlie visual perception. The researchers administered five neuropsychological tests of visual perception to 17 older patients with delirium and two control groups comprising 14 patients with Alzheimer’s dementia and 18 cognitively normal patients. Also, the MMSE and the Consortium to Establish a Registry for Alzheimer’s Disease (CERAD) verbal memory test assessed the specificity of any perceptual impairments. Results revealed that patients with delirium scored significantly lower than cognitively normal patients on all perceptual tasks and significantly lower than patients with dementia on three of these tasks. Mini-Mental State Examination scores did not differ between the delirium and dementia groups, and patients with delirium showed significantly better verbal recognition performance than those with dementia. Overall, the results suggested that individuals with delirium have specific visual perceptual deficits that cannot be fully explained by general cognitive impairment.
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In addition to attention, memory, and visual deficits, language disturbance is a prominent neuropsychological finding in delirium. Deficits may include paraphasias, dysarthria, dysnomia, reduced fluency, and tangential, circumstantial, and disorganized speech (Baranowski & Patten, 2000). Wallesch and Hundsalz (1994) examined naming and word comprehension performance in both delirious patients and patients with Alzheimer’s disease (AD). They found that although both groups had similar levels of impairment, they had differences in types of errors. In particular, the delirious patients produced more unrelated misnaming errors, which the authors interpreted as misperceptions. Visual hallucinations were more common in delirium than Alzheimer’s disease. Also, unlike the AD patients in which word frequency was related to misnaming, there was a lack of correlation between word frequency and misnaming in delirious patients. Intrusions were also more prominent in delirious patients. Rudolph et al. (2008) conducted research to determine if post-operative delirium was associated with early and long-term Post-operative Cognitive Dysfunction (POCD). It was hypothesized that patients with post-operative delirium would be more likely to meet criteria for diagnosis of POCD and that subjects with long-lasting delirium (3 days) would be more likely to have early and long-term POCD. International recruitment of 1218 participants aged 60 who were undergoing non-cardiac surgery was conducted. Participants were excluded if they had a score of 23 on the MMSE, a central nervous system disease including dementia or Parkinson’s disease, previous neuropsychological testing, illiteracy, inability to understand the language of the test administration, administration of tranquilizers or antidepressants prior to admission, cardiac or neurosurgery, severe hearing or vision disorders, life expectancy less than three months, or refusal to comply with the protocol. POCD is often accessed via neuropsychological tests that measure a variety of cognitive domains, including attention, memory, executive function, visuospatial abilities, psychomotor, and language function (Silverstein, Steinmetz, Reichenberg, Harvey, & Rasmussen, 2007). As such, the Visual Verbal Learning Test, the Concept Shifting Test, the Stroop Color-Word Test, and the LettereDigit Substitution were completed upon entry into the study, post-operatively at seven days or hospital discharge (whichever came first), and at three months. Results indicated that patients with postoperative delirium had a higher incidence of early POCD, although conclusions about long-term POCD were impossible to render due to limited power and missing data. Early POCD was more common in participants who developed long-duration (3 days) delirium. Given that inattention is a predominant cognitive symptom of delirium, and that attention is important for optimal performance on all neuropsychological tests (Stuss & Levine, 2002), it is important to note that delirium and POCD are not necessarily independent conditions. Nevertheless, the data highlight the importance of neuropsychological testing for assessing delirium and related conditions.
THE IMPORTANCE OF ASSESSING DELIRIUM Delirium is often undiagnosed, despite its high frequency in elderly medical patients (Francis, Strong, Martin, & Kapoor, 1988; Inouye, Foreman, Mion, Katz, & Cooney, 2001; Lewis, Miller, Morley, Nork, & Lasater, 1995). One of the reasons that delirium is not identified is because older patients frequently present with hypoactivity and lethargy, rather than with agitation and hallucinations (Inouye, 1994). Also, cognitive function is rarely formally assessed in medical evaluations. Perhaps as a result of both of these factors, recent research found that emergency physicians (EP) missed delirium in 76% of the cases (Han et al., 2009). Also, the researchers found that of admitted patients whose delirium the EP missed, over 90% of these cases were also missed by the hospital physician at the time of admission. This is particularly concerning given that if delirium is missed in the ED, there is a potential delay in diagnosing delirium in the hospital setting. Kakuma et al.
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(2003) found that older patients whose delirium was unrecognized by the EP had the highest death rate, compared with ED patients whose delirium was recognized and patients without delirium. Han et al. (2009) offer additional support for the importance of diagnosing delirium. For example, ED patients with underlying life-threatening illnesses may receive inappropriate diagnostic evaluations and be discharged home. Once home, they may be unable to comprehend their discharge instructions, thus leading to non-adherence and medical errors. Although cognitive function is rarely formally assessed in medical evaluations, similarly medical factors are at times unfortunately not taken into consideration during a cognitive evaluation. Although the literature on cognitive assessment in dementia often includes an overview of delirium, rarely is the frequency of delirium addressed or how to adequately screen for it before attempting an extensive battery of cognitive tests. Inouye (1994) suggests that any deterioration in mental status in a hospitalized elderly patient should be considered to be delirium unless determined otherwise. Given that Treloar and MacDonald (1997a; 1997b) found that the symptoms most associated with reversible cognitive dysfunction were “quiet” symptoms, such as slowness of thought, speech incoherence, fluctuating attention, and plucking at bedclothes, formal assessment appears to be critical to the identification of delirium. It is crucial to distinguish dementia from delirium. Delirium is usually associated with a potentially life-threatening medical condition that needs to be addressed immediately by appropriate medical personnel. Delirium is prevalent in persons with dementia (Voyer, Cole, McCusker, & Belzile, 2006). Subjective memory complaints, newly diagnosed dementia, and need for long-term care have been associated with delirium in elderly patients after hospitalization (Rahkonen, Luukkainen-Markkula, Paanila, Sivenius, & Sulkaya, 2000) or hip surgery (Bickel, Gradinger, Kochs, & Forstl, 2008). This highlights the notion that delirium does not merely have short-term sequalae; rather, it may predict a future cognitive decline that is associated with an increased risk of dementia. Delirium superimposed on dementia (DSD) ranges from 22e89% in hospitalized and communitydwelling older adults aged 65 and older with dementia (Fick, Agostini, & Inouye, 2002). Previous studies have found DSD may lead to increased rates of re-hospitalization within 30 days (Fick & Foreman, 2000). In addition to DSD, factors which are typically associated with missed or misdiagnosed delirium include: inconsistencies in the terminology used to describe delirium; failure to conduct an objective test of cognition screening; presence of the hypoactive or hypoalert subtype, which is frequently misdiagnosed as depression; and fluctuation in the intensity of symptoms with periods of apparent lucidity (McAvay et al., 2007). One of the most important and clear distinctions between dementia and delirium is that dementia occurs in the presence of a normal level of consciousness (Rabins & Folstein, 1982). The presence of hallucinations and delusions does not reliably distinguish between the two groups (Rabins & Folstein, 1982), although other authors (Beresin, 1988; Roth, 1991) have asserted that hallucinations are usually less florid in dementia. Delirium typically has an acute onset and a shorter duration than dementia, which usually has an insidious onset. Orientation and memory are typically impaired in both conditions and cannot be used to reliably distinguish the two. An abnormal EEG (grade II or III) was found in 59.1% of psychogeriatric inpatients diagnosed with delirium in contrast to abnormal EEGs found in 40.1% of patients with dementia, or other organic disorders, and 12% of psychiatric patients without delirium or dementia (Rosen et al., 1994).
DIAGNOSTIC CRITERIA Diagnostic criteria for delirium first appeared in DSM-III (Trzepacz, 1996). In the DSM-III, delirium was listed as an organic brain syndrome with the essential feature of a “clouded state of consciousness
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(reduced clarity or awareness of the environment), with reduced capacity to shift, focus, and sustain attention to environmental stimuli” (APA, 1980). Additional criteria included perceptual disturbances, incoherent speech, disturbed sleepewake cycle, alterations in psychomotor activity, memory impairment and disorientation, a fluctuating course, and evidence of a presumably etiologically-related specific organic factor. The diagnostic criteria for delirium in DSM-III-R emphasized difficulty maintaining and appropriately shifting attention and disorganized thinking, rather than the vague “clouded state of consciousness” used in the DSM-III (APA, 1987). Also included were a reduced level of consciousness, perceptual disturbances, disturbed sleepewake cycle, alterations in psychomotor activity, disorientation, impaired memory, and a fluctuating course. The DSM-III-R diagnosis also required evidence of a specific organic factor or a presumed organic factor that was considered to be etiologically related. Similar to the DSM-III criteria, the DSM-IV required a “disturbance of consciousness (i.e., reduced clarity of awareness of the environment) with reduced ability to focus, sustain, and shift attention” (APA, 1994). The diagnosis also required a change in cognitive ability or a new perceptual disturbance that could not be explained by a dementia and an acute onset with a fluctuating course. Specific etiologies were to be identified in the diagnosis, including “delirium due to a general medical condition” (which had to be specified), “substance intoxication delirium,” “substance withdrawal delirium,” “substance-induced delirium” (associated with medication or exposure to toxins), and “delirium due to multiple etiologies.” When the etiology was suspected, but had not been established, the diagnosis was “delirium not otherwise specified.” The latter category was also appropriate when the etiology did not fall into one of the other categories, such as “delirium secondary to sensory deprivation.” Additional features of delirium presented in the DSM-IV indicated that disorientation to time may be the first symptom to appear in mild delirium and that sensory misperceptions are primarily visual, although they could occur in other sensory modalities. Associated features included a disturbed sleepewake cycle, increased or decreased psychomotor behavior, and emotional disturbances, which tended to occur most often at night when fewer environmental cues were present. It was also noted that EEGs were often abnormal with evidence of generalized slowing or fast activity. The DSM-IV criteria have been criticized for not accurately portraying delirium as a diffuse disorder of the brain with multiple cognitive and behavioral deficits, with a resultant higher risk of misdiagnosis (Trzepacz, 1996). In its most recent edition, the DSM-IV-TR contains much of the same diagnostic criteria but several changes have been made. Specifically, in the “Associated Features” section, modifications were made to emphasize the presence of two varieties of delirium: hyperactive and hypoactive. Text was also added to the “Specific Age Features” section to reflect the finding that advanced age has been found to be a risk factor for delirium in a variety of study populations, even after controlling for other risk factors (such as concomitant illness). Prevalence data on delirium in a variety of medically ill populations are now available (e.g., up to 60% of nursing home residents aged 75 or older may develop delirium). Also, in the current DSM-IV-TR, the importance of early recognition and treatment of delirium is added to the Course section of the text. Furthermore, under the criteria for “delirium due to a general medical condition,” the list of associated general medical conditions was reorganized and updated. Under “substance-induced delirium,” text was added to clarify that the onset and offset may be affected by various factors such as brain damage, older age, and substance half-life (APA, 2000). Despite these changes, the DSM-IV-TR continues to be criticized. For example, the current criteria for delirium do not address the prodromal or affective symptoms (e.g., depressed mood) of delirium, which might be more prominent in patients with delirium in palliative care settings and also associated with worse outcomes (Alici & Breitbart, 2009). Further, subsyndromal delirium is not recognized in
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DSM-IV-TR, nor are guidelines offered for when post-delirium cognitive impairment is better attributed to dementia. It is hoped that the DSM-V will rectify some of these deficits. Meagher and Trzepacz (2007) proposed that the neuropsychiatry of dementia and delirium should be highlighted in the upcoming DSM-V and suggest the following: (1) dementia research should carefully research any delirium component and utilize instruments that capture differentiating characteristics; (2) categorization of the differing courses of delirium symptoms (e.g., acute transient versus recurring); (3) inclusion of phenomenological detail regarding syndromal and subsyndromal delirium; (4) inclusion of phenomenological detail and relative frequency of symptoms for major types of dementias; and (5) emphasis on the differential diagnosis of delirium and subsyndromal delirium in the dementia sections as possible reasons for the clinical presentation during the course of illness in those who are treatment refractory.
REVIEW OF DELIRIUM ASSESSMENT MEASURES Abbreviated Mental Test The Abbreviated Mental Test (AMT; Hodkinson, 1972; Jitapunkuel, Pillay, & Ebrahim, 1991) consists of 10 items that assess orientation, memory, and mental control, and is a frequently used measure of mental status in the United Kingdom. A validity study revealed no significant difference in AMT scores between elderly patients pre-surgically, while those who subsequently developed delirium had a significantly greater decline in AMT score post-operatively (Chonchubhair, Valacio, Kelly, & O’Keefe, 1995). A decline of two points on the 10-point scale yielded a 93% sensitivity and an 84% specificity for diagnosis of postoperative delirium, with an AMT score of less than 8 proposed as an indicator of delirium. No data were provided on the ethnicity of the sample used to validate the measure. The authors also did not provide information on the effects of age and education on the scale. The validity of the AMT was examined in Spain among individuals chosen randomly from census data and outpatients diagnosed with dementia (Sarasqueta et al., 2001). In the community sample, 11 were diagnosed with dementia and 85 without. In the total sample, a score of 7 maximized the efficacy of the test. The sensitivity for this cutoff point was 91.5% (78.7e97.2%) and the specificity was 82.4% (72.2e89.5%). Although a score of 9 offered 100% sensitivity, it increased the proportion of false positives to 66%. Similar research conducted in Germany (Linstedt, Berkau, Meyer, Kropp, & Zenz, 2002) found congruent results. In follow-up studies, Swain, O’Brien, & Nightingale, (1999) and Swain, O’Brien, and Nightingale (2000) examined the relationship between the AMT and the MMSE, and the AMT, the AMT4, a 4-item version of the AMT (AMT4), and the MMSE, respectively. The prospective studies examined 276 patients admitted to an elderly medicine unit at an inner city teaching hospital. In the first study (Swain, O’Brien, & Nightingale, 1999), the positive predictive value of the AMTwas 92.7%. In the second project, the AMT4 had a predictive efficiency of 83.3% for the AMTand 73.2% for the MMSE. The results support the notion that the AMT4 may be useful in the initial assessment of cognition in elderly patients, with minimal loss of accuracy in detecting marked cognitive impairment when compared with the AMT.
Cognitive Test for Delirium The cognitive test for delirium (CTD) was designed to assess cognitive functioning for the purpose of identifying delirium in an intensive care unit (Hart et al., 1996). The two alternate forms of the CTD consist of five subtests that assess orientation, attention span, memory for words and pictures of objects, comprehension, and vigilance. Items are included from the Wechsler Memory Scale-Revised
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and the Boston Diagnostic Aphasia Examination and conversion formulas for scoring the subtests are provided. The scores for each subtest range from 0e6 and are summed to produce a maximum score of 30. The CTD requires approximately 10e15 minutes administration time and was designed to accommodate medically ill patients who may have significant functional limitations, such as intubation, motor restrictions, or illiteracy. Items are presented to enhance the patient’s attention, visual stimuli are enlarged, memory testing uses both verbal codes and pictures to facilitate encoding, and only nonverbal responses are required by patients. Internal consistency was demonstrated by a coefficient alpha of 0.87 and the first factor in a principal components analysis accounted for 73% of the variability (Hart et al., 1996). An intraclass correlation coefficient of 0.90 revealed high agreement between the two alternate forms. Performance on the CTD was compared for patients with delirium (n ¼ 22; mean age ¼ 62.5, SD ¼ 14.4), dementia (n ¼ 26; mean age ¼ 64.9, SD ¼ 12.3), schizophrenia (n ¼ 25; mean age ¼ 34.4, SD ¼ 14.6), and depressive illness (n ¼ 30; mean age ¼ 38.8, SD ¼ 14.6). A MANCOVA, which covaried gender, age, and education, found a significant difference between the groups on the CTD and MMSE with post hoc tests revealing poorer performance for the patients with delirium. A receiver operator characteristic (ROC) curve analysis identified an optimal cutoff score of Accessed 1.5.09. Caswell, L. W., Vitaliano, P., Croyle, K., Scanlan, J. M., Zhang, J., & Daruwala, A. (2003). Negative associations of chronic stress and cognitive performance in older adult spouse caregivers. Experimental Aging Research, 29, 303e318. D’Andrea, J., Daniels, R., & Heck, R. (1991). Evaluating the impact of multicultural counseling training. Journal of Counseling and Development, 70(1), 143e150. De Jong Gierveld, J., & Peeters, A. (2003). The interweaving of repartnered older adults’ lives with their children and siblings. Ageing & Society, 23, 187e205. Derogatis, L. R., & Spencer, P. M. (1982). The Brief Symptom Inventory (BSI): Administration, and Procedures Manual-I. Baltimore, MD: Clinical Psychometric Research. Dilworth-Anderson, P., Goodwin, P., & Williams, S. (2004). Can culture help explain the physical health effects of caregiving over time among African American caregivers? Journal of Gerontology: Social Sciences, 59B, S138eS145. Dilworth-Anderson, P., Williams, I. C., & Gibson, B. (2002). Issues of race, ethnicity and culture in caregiving research: A 20 year review. The Gerontologist, 42, 237e272. Family Caregiving Alliance. (2006). Caregiver Health: A population at risk. Accessed 12.10.09.
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Zarit, S. H., Stephens, M. A., Townsend. A., & Greene, R. (1998). Stress reductions for family caregivers: Effects of adult day care use. Journal of Gerontology Series B: Psychological and Social Science, 53, S267e277. Zarit, S. H., Davey, A., Edwards, A. B., Femia, E. E., & Jarrott, S. E. (1998). Family caregiving: Research findings and clinical implications. In B. Edelstein (Ed.), Clinical Geropsychology (pp. 499e523). Oxford, UK: Elsevier. Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1988). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30e41.
CHAPTER
Assessment with Late-Life Families: Issues and Instruments
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Brian D. Carpenter, Elizabeth A. Mulligan Department of Psychology, Washington University, St. Louis, Mo, USA
INTRODUCTION Of all the groups we join throughout the lifespan, one of the most important and enduring is our family. We all start in one, most of us all live within one, and many of us extend the tradition and create our own. Yes, the shape, size, and significance of our families may differ, but we share the experience of being part of this very intimate group. Family bonds are important at every phase of life yet seem particularly meaningful at both the beginning and end of life, when dependency on family is more common. They, in turn, can exert a powerful influenceepositive or negativeeon the quality of our lives. In later life, families can be a key source of support as older adults face the challenges of aging. And they can be an impediment to successful aging, in ways both direct and indirect, intentional and unintentional. Families can be both helpful and hurtful; indeed, even the same family can be both. This chapter is designed to help clinicians and researchers assess what features of the family are likely to influence how they manage events later in the lifespan. We have two main goals in the chapter. The first is to help clinicians and researchers think about the range of issues that can influence the format, structure, content, interpretation, and implementation of an assessment with late-life families. Our second goal is to review a number of assessment models and tools that may be useful. Frankly, there are few assessment instruments that have been designed specifically for late-life families or adapted for them with sufficient validation. Still, we believe there are some instruments that have the potential to be useful with late-life families, with certain caveats in mind. We provide a summary of those instruments, after first discussing general issues in late-life family assessment.
RATIONALE FOR A CHAPTER ON FAMILY ASSESSMENT Four realities of contemporary life make family assessment important in clinical gerontology. Perhaps the most obvious is the now familiar aging of the population. As the number of older adults grows, so too will the number of families supporting them. One estimate suggested that 34 million adultsda full 16% of the populationdare providing care to people over age 50 (National Alliance for Caregiving & AARP, 2004), and that number will continue to rise. If care for older adults was a “normative experience” for families in the past (Brody, 1985), it is likely to become near universal in the coming decades. In a related change, the growth in the number of very old people (aged 85 and older) will be the most rapid of all, doubling to 9.6 million by 2030, and doubling again to 20.9 million by 2050 (He, Sengupta, Velkoff, & DeBarros, 2005). This group may have unique and potentially intensive care needs that demand even more assistance from family members. At the same time, with three-, four-, and even Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10011-9 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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five-generation families becoming more common, older adults are likely to find themselves caring for even older parents. It is also worth noting that while the number of older adults will increase in the coming decades, the number of younger family members available to take care of them will not increase at the same pace (Mack, Lee, & Friedland, 2001), meaning further burden on the family members who are available. These are not singular developments. Further out on the horizon is the New Boomer generation (born 1983e2001), which includes almost as many people as the original Baby Boom (Carlson, 2009). When they reach old age, beginning around the year 2048, we are likely to experience a repeat of current challenges. Therefore, now is a good time to start developing and using assessments with latelife families. A second reality is that the majority of support to older adults is provided not by formal caregivers, agencies, or institutions, but by spouses, adult children, siblings, and a variety of other family members (National Alliance for Caregiving & AARP, 2004; National Family Caregiving Alliance, 2000). Families are the ones doing the work. Therefore, any attempt to understand how best to support older adults must include the people who provide the majority of that support. A third issue is that assistance to older adults is typically provided not by one person working in isolation, but rather by multiple family members collaborating. Families are a team in their work, and the impact of elder care is felt throughout the family system (Connidis, 2001; Qualls, 2000), taking place in an intricate “life event web” (Pruchno, Blow, & Smyer, 1984). Changes in one person’s life ripple within and across generations. Consequently, an approach that takes into account the perspective and circumstance of each person in the family is essential. A final reality is that providing support to older adults brings with it many challenges that are likely to test the family and its resources. Families are called upon to provide a wide range of assistancedfinancial, housing, transportation, personal care, emotional, and decision support. And they do so while navigating complicated and discontinuous medical, social service, and entitlement benefit systems; while balancing elder care with competing work, family, and personal responsibilities; while figuring out how to provide support in the context of an often long and complex family history; and while negotiating with everyone in the family on how caregiving will change roles, responsibilities, and relationships. In an outrageous understatement, elder care is demanding work, both physically and psychologically, for the entire family. Assessment is an important way to understand the stresses and resources within the family, and the help they need to be successful. For professionals from many disciplines who collaborate with families in later life, assessment is the first step in learning what the family wants, what the family needs, how the family functions, and how others can interact effectively with the family. To be more specific, assessment with late-life families can:
Identify families who may be vulnerable or at risk for suboptimal functioning in their relationships and supportive activities; Highlight individual and family strengths that can enhance family relationships and facilitate elder support; Clarify individual and family expectations and preferences for what and how support should be provided; Assist clinicians and formal service providers in knowing how to tailor interventions and programs best to support families; Track changes and growth in families over time as interventions and services are implemented, and as the circumstances of the family evolve; Guide researchers in identifying important causal processes and outcomes in the family system.
The value of assessment will differ for each family, depending on the family’s circumstances and needs. Indeed, by virtue of their idiosyncratic histories and developmental trajectories, families in later
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life are probably more diverse than at any other time in the lifespan. Attention to differences is essential, and we turn to this issue of diversity next.
DIVERSITY IN LATE-LIFE FAMILIES Differences in family structure, sexual orientation, gender, socioeconomic status, race and ethnicity, culture, and values are becoming more apparent both within and between late-life families. For assessment, this means there is a need for instruments whose content is sensitive to differences and whose norms reflect the various populations with which the instruments are used. There is a parallel demand for clinicians and researchers who are knowledgeable about diversity later in life and who are skilled in the application and interpretation of appropriate assessment tools (American Psychological Association, 2003). Below we discuss some key facets of diversity, with an emphasis on their implications for late-life family assessment. One obvious change in families that has been unfolding for decades is increased diversity in family structure. Longer life expectancies combined with lower fertility rates have resulted in families composed of more living generations, with fewer people in each generation, resulting in a “beanpole” family structure, in contrast to the previously dominant “pyramidal” structure (Bengtson, Rosenthal, & Burton, 1990). Multigenerational relationships have become more important in light of this population trend. In some cases these relationships are a welcome resource (e.g., a niece providing instrumental support to a childless older adult), but in other cases they create additional stress in the life of an older adult (e.g., a grandparent taking care of a grandchild because of substance abuse in the middle generation). This has obvious implications for the number of people who are likely to be part of a family system that is the target of assessment, and it broadens the range of issues a late-life family may face. Another byproduct of longer life expectancies is that family relationships are likely to evolve over many decades. Developmental models that explain the evolution of prolonged family relationships have not yet emerged. Assessment tools also have lagged, and measures that were developed and validated with younger, more condensed families, may not have adequate content coverage and may not come equipped with adequate norms. Inadequate norms are also an issue in light of the changing composition of late-life families. Higher rates of divorce and remarriage have made blended families more common, and, within them, family norms, expectations, and roles may be less clear. For example, adult children may not feel as obligated to care for a stepfather in comparison with a biological parent (Ganong & Coleman, 2006). Patterns of communication and decision-making also may differ. Not only are there more people to communicate with, but psychological residue from a divorce or remarriage may strain communication and collaborative decision-making. Remaining unmarried and choosing not to have children also have become more common. About 4% of the current population of older adults have never been married, and about 20% are childless (Connidis, 2001; He et al., 2005). These older adults typically receive emotional and instrumental support from siblings and fictive kin, that is, neighbors and friends who are invited to fulfill the role of family (Barresi & Hunt, 1990; Gironda, Lubben, & Atchison, 1999). In some cases, formal care providers, such as home health aides and private duty nurses, also may develop close relationships with older adults and take on family-like roles (Piercy, 2000). Fictive kin are also a source of support for other groups of older adults, including lesbian, gay, bisexual, and transgender individuals (Savin-Williams & Esterberg, 2000). Because the current cohort of older adults lived through a historical period when homosexuality was not accepted, they may have faced criticism and estrangement from their family. As a result, friends may be their primary (and preferred) source of support. An additional consideration with this group of older adults
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is that same-sex couples face unique legal challenges, including restrictions regarding taxation and inheritance, and surrogate decision-making. These challenges may place a strain on the entire family system. Another epidemiologic trend that affects family structure is the greater life expectancy for women relative to men. Older women of all ages are less likely to be married: by age 75, only 29% of women are married, compared with 67% of men (He et al., 2005). In addition, because the current cohort of older women spent less time in the workforce, they are more likely to struggle financially during late life (He et al., 2005). Consequently, older women may be more likely to turn to their children for emotional and instrumental help, and the characters who are the focus of the assessment and the stressors that arise are likely to reflect this. In addition to more varied family structures, late-life families also are becoming more diverse in terms of racial, ethnic, and cultural background. By 2050, ethnic minorities over age 55 will make up a greater proportion of the population, increasing from 8% to 12% for African Americans, 6% to 18% for Hispanics, and 3% to 8% for Asian Americans (He et al., 2005). These trends are important because people from different racial and ethnic backgrounds may have distinct issues in late life, may have unique patterns of relating and communicating, and may respond differently to assessment measures, making clear the need to validate tools and develop norms for specific populations. For example, in Asian American and Latino families, adult children often feel a strong obligation to provide care for their parents, although these beliefs may vary depending on the family’s level of acculturation (Knight et al., 2002; Pinquart & Sorensen, 2005). Consequently, for measures of filial responsibility, separate norms would be needed. As a final point, we want to emphasize that diversity within families also has important implications for assessment. For example, in a recent study, older adults were more likely to have traditional family structures than even their own offspring (Blieszner, 2009). Members within the same family may be diverse in terms of their experiences, viewpoints, stages in life, and even their race and ethnicity, in the case of interracial and multiracial children. Likewise, differences in values and differences in resources (psychological, financial) within the family may make collaboration across generations more difficult (Fingerman, 2001). We highlight these facets of family life in order to heighten sensitivity to differences as people prepare, administer, and interpret assessments. To paraphrase a well-worn axiom, “If you’ve seen one family, you’ve seen one family.” Despite the intention of most assessment instruments to aggregate and summarize, assessment means also being prepared for idiosyncrasy and difference.
OTHER RELEVANT DEMOGRAPHIC AND SOCIAL TRENDS We next highlight other demographic, social, and contextual trends that can influence the dynamics, resources, and vulnerabilities of late-life families. Clinicians and researchers who are aware of these trends may be better equipped to choose appropriate assessment instruments, interpret their results accurately, and offer relevant, effective recommendations. Although there is some debate about whether geographic dispersion of family members is increasing (Wolf & Longino, 2005), the reality is that distance matters in families. The majority of family members live within 20 minutes of older care recipients (Wagner, 1997), but it is not uncommon to have family members living in different parts of the country or world. Distance makes it more challenging for families to identify when older adults need assistance, judge what level of assistance they need, locate and manage trustworthy and dependable support resources in the local community, negotiate the division of responsibility and the logistics of caregiving among multiple family members, and maintain communication with everyone involved. In terms of assessment, geographic distance can
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hinder obtaining information from the full family system, even though long-distance family members may be very involved in care decisions. Distance also makes it difficult to observe interpersonal dynamics that may be important to understanding the family’s strengths and weaknesses. One feature of modern society that might counteract the effects of dispersion is the rapid development and dissemination of technology, which has changed the way assessment data can be obtained. Web-based home and personal monitoring systems, for instance, enable clinicians and researchers (and families, for that matter) to observe older adults from a distance via live video stream from the home; track behavior such as refrigerator, cupboard, and pill bottle activity; and monitor physiological indicators of health such as heart rate and blood sugar. Of course these technologies raise important issues about confidentiality, but they do provide an additional resource for assessment and intervention. Monitoring technologies are complemented by an expanding array of communication tools, such as cell phones, text messaging, e-mail, and videoconferencing, along with social networking products such as Facebook, MySpace, and Twitter. Some of these tools can enhance the assessment process, by facilitating access to people’s opinions (e.g., e-mailing questionnaires) and their behavior (e.g., conducting behavioral observations via videoconferencing). And some of these tools might be the topic of assessment themselves. For example, when appraising the social support resources of a family, electronic communication and on-line acquaintances need to be considered. Many of these tools have become ubiquitous among younger generations, with more gradual adoption by older adults (Jones & Fox, 2009). Consequently, it may be useful to assess, when relevant, the availability, receptivity, and familiarity with different communication technologies. A family may be willing to invest in cable Internet access for an older adult’s home computer, a reasonable intervention to encourage social connection, but if the older adult is resistant, and if sufficient training and technical support are not provided, the effort may be doomed. Another trend with a more uncertain trajectory is related to current health and illness in the population. Because of improved public health, in recent years some evidence has emerged to suggest that people in the United States are not only living longer, but also healthier, with fewer, better managed chronic diseases and greater functional independence (He et al., 2005). At the same time, there are other trends that could undermine these gains. Increasing rates of diabetes and obesity, for example, could cancel out improvements in other areas. In this case, people may need family assistance earlier and for longer periods of time, and younger family members, now with their own health problems, may find it difficult to care for aging relatives. These trends highlight the importance of incorporating broad medical factors across all generations in family assessment. A final note of emphasis about these demographic and social changes is that they are not universal. Whether because of location, finances, knowledge or other reasons, access to the Internet, an ability to travel by plane, adequate health insurance coverage, and financial resources are dispersed unevenly in our society. Conscientious assessment keeps this additional facet of diversity in mind.
KEY ASSESSMENT ISSUES When planning and executing an assessment, some issues are common across age groups, and some are unique to late-life families. Keeping this in mind the following questions can help guide the pragmatics of administration, and the interpretation and application of results.
What is the Purpose of the Assessment? The scope and content of an assessment are naturally influenced by its purpose. A clinical assessment may use different instruments and procedures than an assessment designed to address a research hypothesis.
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As for clinical assessments, a key first step is to grasp the referral question. What is the main issue or problem that needs clarification or the primary question that needs to be answered? Is it a “family” issue that involves the entire system (e.g., How prepared is the family as a group to coordinate transportation for an older father’s physical therapy appointments?) or a “family-related” issue (e.g., How is an adult survivor of child abuse reacting to her father’s diagnosis of prostate cancer?) (Feetham, 1991)? The level of analysis is likely to affect which instruments are chosen and who takes part in the assessment.
Who is the Target of the Assessment? The purpose of the assessment will, to some degree, influence who is assessed. But the theoretical orientation of the clinician and goal of the researcher also may guide who takes part. A family systems approach would attempt to include all key family members in the assessment, but that does not mean it is necessary to talk with every family member in every situation. Consider the case of an older woman who is dealing with end-stage renal disease. Disease management tasks likely include frequent dialysis, symptom monitoring, and lifestyle modifications, all of which have an impact on the life of both the person with the disease and her partner. In this case a dyadic assessment may be sufficient to answer a question about how best to support this couple. In other circumstances a more expansive assessment may be appropriate. An older adult with severe and worsening chronic obstructive pulmonary disease may be considering home hospice, and an assessment of the broader family systemdadult children, grandchildren, other relatives, friendsdmay be important to determine the extent to which the family will be able to manage the older adult’s care needs at home, above and beyond the support provided by the hospice agency.
What Should be Told to the Participants? An early step in the assessment process includes describing to the family what they are about to undertake. Family assessment raises a number of ethical considerations in this arena that deserve mention (American Psychological Association, 2002). First, principles of informed consent demand that family members are told what information will be gathered and what will be done with it. That means telling people what kinds of questions they will be asked, what kinds of tasks they may be asked to do, which family members will be involved, and how and with whom results will be shared. Informed consent may be challenging when working with older adults who have some degree of cognitive impairment. Using clear, simple language, with adequate repetition and clarification, may help maximize understanding. In some cases, proxy consent, along with assent from the older adult, may be required. In all cases, informed consent should be considered a process rather than an event, meaning that consent should be evaluated throughout the assessment. Consent and feedback also raise the issue of confidentiality, when people are asked about others in the family. If a sibling is going to be asked about changes in his brother’s functional abilities, his brother should know. If an adult child is going to be asked to offer an opinion about a parent’s decision-making style, their parent should know. Indeed, in the case of research, many Institutional Review Boards require special consent procedures when family members are asked to provide information about someone else in the family, whether or not that third party is also involved in the research (National Institute of Health, 2001). A related issue has to do with mandatory reporting when an assessment raises suspicions about elder abuse or neglect. Clinicians and researchers must be clear in their own minds, and clear with the people they are assessing, about their obligations to disclose to appropriate authorities when there are concerns about the safety and welfare of a family member.
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Another ethical issue is the responsible use of assessment materials. A clinician or researcher should use only instruments that are within their scope of expertise. In addition, the user should be aware of the boundaries of the instruments based on their reliability, validity, and applicability to individual families (e.g., availability of relevant norms). Information about the limitations of assessment also should be shared with families when providing feedback.
How Will Information About the Family be Obtained? Assessment information can be obtained via three primary methods: self-report questionnaires; behavioral observations; and clinician-rated scales. Each offers its own unique perspective on the family, and each comes with its own strengths and weaknesses. Self-report questionnaires are relatively brief and efficient, and directly tap a family member’s opinion or subjective experience. At the same time, they rely on a person’s ability to be aware of and reflect upon complex phenomena (e.g., family norms, emotions, communication patterns), are vulnerable to social desirability bias (positive or negative), and often result in a relatively restricted range of responses (most families think they function relatively well). Observational assessments provide relatively objective information but are more time consuming, potentially intrusive, and complex to conduct, often requiring trained raters to code interactions among family members. Finally, clinician-rated scales enable an “expert” to weigh in on how the family is functioning, but are often based on extensive individual and family interviews, which are themselves vulnerable to bias. Ideally, family assessments are conducted with multiple people, in multiple ways, although in reality, resource constraints are likely to dictate what kind of information can be obtained.
When an Instrument Developed Specifically for Late-Life Families does not Exist, What are the Issues in Using Something that has been Developed for Other Groups? As we mentioned earlier, there are few instruments designed specifically for late-life families, particularly instruments developed for clinical purposes, so it is often necessary to modify and adapt existing instruments. This may not be entirely wasted effort, because many models of family functioning (and the assessment tools that emerge from those models) are intended to represent general features or processes that are presumably applicable to all families. Good communication is good communication, regardless of whether you are evaluating a Caucasian or African American family, a straight or gay family, a young or old family. Having said that, there are limits to the generalizability of adapted tools: constructs relevant to latelife families may be missing (e.g., caregiving norms), and some individual items within existing subscales may not be relevant (e.g., “The grown-ups in this family understand and agree on family decisions”). Consequently, whether existing scales adequately capture the experience of late-life families and whether their scores are reliable and valid remain unclear. In general, instruments that have not been validated with late-life families should be used with caution until adequate empirical evidence is gathered to show that the instruments (or their adapted versions) are appropriate for latelife families.
How will Assessment Information from Multiple People be Combined and Integrated? Assessments with multiple family members can yield a great deal of information that needs to be combined into a cohesive summary (Sawin, Harrigan, & Woog, 1995). If you administer the Family Assessment Measure (Skinner, Steinhauer, & Santa-Barbara, 1995) to two older parents and their three
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adult children, for each person you end up with scores on seven family dimensions, meaning you would have 35 subscale scores to digest. In a research study, multilevel modeling (Raudenbush & Bryk, 2002) would be one technique for examining variability at different levels (e.g., within generations, families, or family subsystems). In a clinical context, one approach would be to create aggregate scores (a sum or average) to reflect the overall functioning of the family. For instance, when preparing for family therapy, it may be sufficient to know the overall family’s perception of their style of affective expression. However, one feature of aggregate scores is that they obscure potentially meaningful differences among people within the family. As an alternative, when differences within the family are of interest, discrepancy scores can be calculated (subtracting one person’s score from another’s). As an example, when families are considering housing alternatives for a frail parent, it may be useful to know whether family members have different ideas about co-residence. The challenge of discrepancy scores, though, is to determine what discrepanciesdand what size discrepanciesdare most meaningful. When choosing an assessment instrument, it is also important to notice whether the instrument asks respondents to do their own mental aggregating. For instance, on the Family Assessment Device (Epstein, Baldwin, & Bishop, 1983) people rate items according to “how well it describes your own family.” The instruction forces people to aggregate across different relationships, resulting in a loss of important within-family variability and frustrating respondents who have different relationships with different members of their family. If the goal is to capture those unique relationships, the question would need to be asked for each one. Manuals and instructions for most instruments do not provide explicit guidance on how to combine information from multiple family members, so users must think carefully about what information they want.
At What Point in History Does the Assessment Take Place? With this question we refer to the timing of the assessment relative to: (1) the developmental stage of the family; (2) the developmental stage of individuals within the family; and (3) the point in history when the assessment occurs, with its concomitant social, financial, and political context. This idea of age, cohort, and period effects is portrayed in Figure 11.1 (adapted from Glenn, 2004). Consider this example. Imagine that an older parent is diagnosed with an aggressive form of cancer, and she is told her life expectancy is 6e9 months. This woman and her family will face a number of challenges in the months ahead that span issues of medical care, housing, financial planning, and psychological and spiritual adaptation. An assessment of her family’s resources and ability to manage this hallmark event will differ depending on when the family hears about the cancer diagnosis. Family A in Figure 11.1 receives the news when the older parent is 60 years old. Her adult children are in their 40s, attending to their own work and family responsibilities, with their own young children. Family A
Family B
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80 years old
40 years old
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8 years old
28 years old
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FIGURE 11.1 Assessment in the Context of Lifespan and Sociocultural Contexts.
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In contrast, in Family B, the parent is diagnosed when she is 80. Her children are in their 60s, retired with more free time and financial resources, with children who are out of college and living independently. Each family is in a unique developmental phase, as is each member of the family. Because of those developmental differences, each family is likely to approach this new cancer diagnosis with different expectations, experiences, resources, and competing demands. Family support in late-life will intersect with a variety of events and circumstances: marriage or divorce (or remarriage); the birth of subsequent generations; education and work responsibilities; relocation to another part of the country or world in the case of a job transfer or military deployment; and illness and death in any generation. Any of these events can complicate the resources that families can contribute to elder care, just as they can complicate the psychological and practical picture for people throughout the family. Another layer to consider is the particular time in history when family events occur. An assessment happening today (August, 2009) as we write this chapter would need to account for family functioning in the context of a global economic downturn, tense political situations in Iraq and Afghanistan, health care reform efforts in the new Obama presidential administration, and concern about an H1N1 flu pandemic. Historical events can influence the issues and stressors that are urgent for the family, can guide the questions we therefore ask during an assessment, and can shape the focus of interventions we subsequently recommend. Although it may not be possible or necessary to conduct a systematic assessment of all these factors, keeping them in mind can enrich the understanding of how a family might face a new challenge.
ASPECTS OF FAMILY FUNCTIONING What is important to know about a late-life family? What features of the family predict its ability to meet late-life challenges? And what features might be a useful focus for treatment and intervention? In this section we describe several aspects of functioning that recur across family theories and assessment instruments. Not every assessment will need to address all of them; we describe them here simply to identify common features that influence family functioning.
Family Structure Family structure includes the people who are considered part of the familydpresent members, as well as important figures from the pastdand the quality of the relationships among them. This information can help identify who should be included in an assessment, who might be sources of support for older adults, and what relationships are flashpoints for potential conflict. One way to document family structure is by constructing a genogram. A genogram is a visual representation of a family’s composition, structure, and relationships, constructed with a set of standard symbols to depict the family (McGoldrick, Gerson, & Petry, 2008 is an excellent instructional resource). Although there is no ideal or suboptimal family structure, a genogram can provide preliminary but valuable information about the important personalities in the family and their relationships.
Family History In addition to structure, the process of constructing a genogram also can evoke information about key events in a family’s history, such as births, divorces, and deaths. These past events provide a context for understanding the current functioning of the family. In addition, more subtle, subjective, longstanding interpersonal dynamics often persist within the family of origin, even as people grow older
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(Fingerman & Bermann, 2000; Rossi & Rossi, 1990; Whitbeck, Hoyt, & Huck, 1994). With their long emotional half-life, disappointments and slights, unresolved conflicts or outright abuse can flare up many decades later, complicating a family’s ability to make decisions or engage in care at all (Qualls & Segal, 2003). On the other hand, reviewing important events in the family’s history also can identify strengths in how families have coped with challenges in the past.
Family Roles Family roles reflect how responsibilities and tasks have been divided within the family. These roles become apparent with direct questions about who is responsible for specific tasks, such as who manages family finances, who provides assistance with indoor housekeeping and outside home/yard maintenance, who arranges appointments, and even who typically hosts family functions (Epstein et al., 1983). Sometimes these roles are divided based on occupational expertise within the family: everyone defers legal matters to the adult daughter who is a lawyer; medical questions are directed toward the sister who worked as a nurse; financial issues are seen as the purview of the son in investment banking. Other roles are based on temperament or aptitude: one daughter is the “kin keeper” who always arranges holiday gatherings and hosts them at her home; a nephew with a flexible work schedule is the dependable one who can be counted on to stop by and check in on someone; the remote adult child overseas writes a check to help pay for in-home care. The most efficient way to get this information is through careful questioning and observation, not with the standardized assessment instruments that currently exist. Indeed, family roles emerge even during a simple clinical interview. One person does most of the talking, taking on a leadership role. Another makes jokes or changes the subject or acts as the peacemaker whenever conflicts are mentioned. Identifying family roles can help clarify who might do what in support of an older adult, and how the negotiations might unfold.
Flexibility Flexibility refers to a family’s ability to adapt in response to stressors. In older families, changes in how the family interacts may be necessary as individual needs change (Qualls, 1999). An older parent may need to become more comfortable asking for and receiving help from her children; an adult child may need to make peace with an older in-law to facilitate caregiving; a grandchild may need to assume more responsibility around the house so their parents can tend to an aging parent. If family members resist changing in the face of a new stressor, or if they continue to use coping skills that worked at one time but are no longer effective, important support and supervision may be missing, care responsibilities may be unevenly divided, and family members may place themselves at greater risk for anger, depression, and burnout (Fingerman & Bermann, 2000; Mitrani et al., 2006). Family theories also suggest, however, that too much flexibility can be harmful. A family with no clear rules or roles will find it difficult to make decisions or develop a coherent, organized plan of care (Beavers & Hampson, 1990; Olson, 2000).
Family Contact and Support Contact and shared activities are one set of indicators of family closeness (Bengtson & Roberts, 1991). Types of support include instrumental (e.g., financial assistance, childcare, transportation), emotional (e.g., empathy, affection), and informational (e.g., advice, information) (Cohen & Wills, 1985; House, Umberson, & Landis, 1988). Questions about the type, amount, and direction of support exchange are useful, as are subjective ratings of the quality of interactions, because even if a family is in frequent contact, their interactions could be tense and destructive.
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Family Closeness Family closeness is a broad construct that encompasses emotional bonds, affection, trust, and respect. Healthy families are characterized by a balance between being invested in each other’s lives and maintaining some degree of differentiation and independence (Beavers & Hampson, 1990; Bowen, 1978; Olson, 2000). For example, a family who is not close might remain disconnected even in a time of crisis, such as a new dementia diagnosis in a parent. At the other end of the spectrum, a family who is too emotionally close may have trouble inviting in outside resources or supports. Balanced closeness involves an adaptive level of emotional support and involvement that maximizes functioning for all members of the family.
Decision-Making Skill Effective decision-making skills are essential to the functioning of late-life families, who are likely to face an increasing pace and magnitude of decisions over time. These skills involve the ability to recognize that a decision is needed, gather information to weigh options, consider the benefits and risks of those options, and make and implement a decision. This is another area where current standardized assessment instruments provide little information; the most innovative approaches have used observations of couples or families (e.g., Henry, Berg, Smith, & Florsheim, 2007), but these methods are often impractical in clinical situations.
Communication Communication in late-life families involves both verbal and nonverbal behavior toward one another and takes place over an increasingly diverse set of platforms (e.g., in-person interactions, telephone conversations, e-mail exchanges, text messages, etc.). Healthy families speak to one another in a way that is clear and direct (Epstein et al., 1983; Olson, 2000). It is obvious to whom messages are intended, and it is obvious what is being said or asked. Healthy communication also means being open and respectful of the opinions of others; family members feel comfortable expressing an opinion, even if it contradicts someone else. Disagreements can occur without fear that they will cause irreparable damage. Healthy families are also able to stay on topic when important issues are discussed. In contrast, in a less functional family, members may make assumptions about each other’s feelings and preferences, speak in vague terms, and be unreceptive to differences in opinion (Epstein et al., 1983; Olson, 2000). Many of the standard instruments reviewed later include subscales focused on communication.
Knowledge of Preferences When older adults are no longer able to make decisions on their own, family members are often called upon to be a surrogate and state preferences for them and act upon them. Healthy families are knowledgeable about each other’s preferences, or are at least willing to investigate and consider those preferences. Knowledge is to some degree based on good communication skills, but also genuine curiosity and respect for the wishes of others in the family.
Norms and Expectations Norms reflect the responsibilities that family members feel toward one another. When norms are congruent, family members are likely able to collaborate more efficiently and effectively because of a shared vision and sense of purpose; when norms are incongruent, conflict is more likely, as goals
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diverge (Bengtson & Roberts, 1991). That is not to suggest that family members must all think alike. Indeed, some amount of ambivalence in family relationships is common, often arising from conflicting normative expectations (Connidis & McMullin, 2002; Luescher & Pillemer, 1998). For example, an adult daughter-in-law may feel torn between her desire support her ill mother-in-law and her desire to dedicate her time to her husband and children.
ASSESSMENT INSTRUMENTS In this next section we provide a brief synopsis of instruments. With one exception discussed later, we have chosen not to discuss instruments based on clinician ratings, e.g., Structural Global Assessment of Relational Functioning (American Psychiatric Association, 2000) or observational coding systems, e.g., Structural Analysis of Social BehaviordComposite Observational Coding Scheme (Florsheim & Benjamin, 2001) and Structural Family Systems RatingsdDementia Caregiver (Mitrani, Feaster, McCabe, Czaja, & Szapocznik, 2005). The aforementioned either have not been used widely with latelife families or present pragmatic limitations, despite their potential utility in some circumstances. Instead, we concentrate on self-report instruments because of their relative ease of administration and scoring. We have divided the instruments into two categories. The first includes instruments that have a strong theoretical foundation, extensive previous use in both clinical and research contexts, and adequate or better psychometric properties, although previous work with these instruments has concentrated on younger families. The second category includes instruments that also have a sound theoretical foundation and have been designed for and used with late-life families, although they lack the depth of previous use and documented psychometric strengths of the other instruments. For all these scales we provide a brief description of the instrument and evaluation of its utility, and refer the reader to Table 11.1 for technical details.
Section I: Instruments with Extensive Support for Use with Younger Families Family Assessment Device The Family Assessment Device (FAD; Epstein et al., 1983; Ryan, Epstein, Keitner, Miller, & Bishop, 2005; see Appendix A) is a self-report instrument based on the McMaster Model of Family Functioning, which highlights basic functions important to family health. Given its emphasis on functionality, “healthy” refers to a family’s ability to provide basic resources for its members (e.g., food, security) and accomplish common, critical developmental tasks (e.g., accommodate role transitions, cope with unexpected crises). The McMaster Model (and thus the FAD) focuses on six dimensions of family functioning: problem solving; communication; roles; affective responsiveness; affective involvement; and behavior control. In addition, the FAD also includes a General Functioning scale which can be used as a brief, overall assessment of the family. The scale’s developers acknowledge that the McMaster Model is not an exhaustive list of important facets of the family, but does include clinically useful features. The FAD, therefore, has a definite clinical focus, is designed to differentiate healthy from unhealthy families, and can provide practitioners with information to guide family treatment. There has been some debate about the factor structure of the FAD, with some authors suggesting that factor analysis supports only the use of the General Functioning and Behavior Control subscales (Ridenour, Daley, & Reich, 1999). But the developers of the scale point to the clinical utility and validity of all seven subscales, and argue each provides important information (Miller, Ryan, Keitner, Bishop, & Epstein, 2000a, 2000c). The scale has been translated into 24 languages, and there is
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evidence that it is useful in different cultures (Miller, Ryan, Keitner, Bishop, & Epstein, 2000b; Ryan et al., 2005), although this information is sparse and extensive norms do not exist for diverse populations based on ethnicity, socioeconomic status, or age. In addition, it is not clear how reports from multiple family members should be integrated. Nonetheless, on its face, the FAD addresses constructs that are relevant to late-life families who face developmental challenges that demand communication, shared problem solving, role adjustment, and affective expression, among other skills. Moreover, the extensive history of the development of the McMaster Model and the FAD suggest they have some utility in family assessment and treatment. Another notable strength of the McMaster Model and the instruments associated with it is the integration between assessment and treatment. Indices from the FAD and the McMaster Clinical Rating Scale can be used to guide treatment planning using Problem Centered Systems Therapy of the Family. There is good evidence for the efficacy of this manualized, short-term, systems-oriented treatment, although not with late-life families.
Family Assessment Measure The Family Assessment Measure (FAM-III) (Skinner, Steinhauer, & Santa-Barbara, 1983; Skinner et al., 1995) is a self-report instrument designed to assess perceptions of family strengths and weaknesses. The FAM-III is based on the Process Model of Family Functioning (Steinhauer, Santa-Barbara, & Skinner, 1984), a transtheoretical framework that describes seven broad domains of family functioning: task accomplishment; role performance; communication; affective expression; involvement; control; and values and norms. According to the developers, these domains represent basic, interdependent, and dynamic features of the family. Because these domains are thought to be universally important to family functioning, the FAM-III is presumed to be useful across clinical theoretical orientations and research goals. There are three forms of the FAM-III. The General Scale examines overall family health, the Dyadic Relationship Scale examines how one family member views their relationship with another family member, and the Self-Rating Scale enables one person to evaluate their own functioning within the family. The General Scale also includes indices of social desirability and defensiveness. An abridged version of the instrument, the Brief FAM, exists for each form and was designed for screening or tracking change with repeated, brief assessments. The three forms can be used separately, or together for a more comprehensive portrait of the family (with an obvious increase in time needed for administration). The psychometrics of this instrument are adequate, although reliability is less strong for some subscales. Validity coefficients are generally acceptable, although as with many family instruments, predictive validity is less well established. The original validation of the FAM included norms for relatively young families (mean age of the adults¼38.6), and though subsequent research has provided expanded norms for specific clinical groups, no studies have focused on late-life families. In addition, use of the instrument with families of varying structures and racial/cultural backgrounds has been limited. Still, the transtheoretical framework helps make this instrument applicable to families of many types, at any stage of development. With its many forms, the FAM-III can provide a great deal of data about a family, which brings the benefit of comprehensiveness and the burden of integrating so much information. In addition to the profile provided by the FAM-III, which depicts areas of relative strength and weakness, the instrument also enables comparisons of perceptions within the family when family members complete the same form. For instance, an adult child may have a different perception of communication within the family compared with her older father, which can provide a point for discussion or intervention. Some approximation of this is possible with the other instruments reviewed in this section, although the FAM-III is already constructed for this purpose.
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Table 11.1 Assessment Instrument Properties Instrument
Focus
Source
Scales
Format
Source of Information
Instruments with strong clinical and research support, but limited use to date with late-life families Family Assessment Device (FAD)
Structural and organizational properties of families.
Epstein, N.B., Baldwin, L.M., & Bishop, D.S. (1983). The McMaster Family Assessment Device. Journal of Marital and Family Therapy, 9, 171–180.
General Functioning Problem Solving Communication Roles Affective Responsiveness Affective Involvement Behavior Control
60 statements rated on a 4-point scale
Self-report
Family Assessment Mesasure - III (FAM)
Family systems processes critical to accomplishing basic, developmental, and crisis-related tasks.
Skinner, H.A., Steinhauer, P.D., & Santa-Barbara, J. (1995) Family Assessment Measure-III Manual. Toronto, Canada: Multi Health Systems.
Task Accomplishment Role Performance Communication Affective Expression Involvement Control Values and Norms Social Desirability Defensiveness
General Scale (50 items); Dyadic Relationship Scale (42 items); SelfRating Scale (42 items); Brief FAM (14 items; brief form exists for each of the 3 scales),
Self-report
Olson, D.H., Gorall, D.M., & Tiesel, J. (2007). FACES IV and the Circumplex Model: Validation study. Retrieved July 6, 2009 from Life Innovations, Inc. Web site: http:// www.faceive.com/ home.html
Balanced Cohesion Balanced Flexibility Disengaged Enmeshed Rigid Chaotic
42 items rated on a 5-point scale.
Self-report
34 items rated a 5-point scale to indicate how much each statement fits a family; 2 items rated on a 5-point scale to indicate overall family fuctioning and level of independence in the family. Long Form: 90 true/false items (10 per subscale) which can be reworded to inquire about the real, Ideal, or expected family.
Self-report
Family Adaptability and Cohesion Scales (FACES IV)
Cohesion and flexibility dynamics within the family.
Dimensional and ratio scores calculated that take into account relative amounts of balanced and unbalanced traits endorsed.
Self-Report Family Inventory (SFI)
Competence of the family system to carry out tasks and manage itself, and functional and behavioral styles of relating and interacting.
Beavers, W.R. & Hampson, R.B. (1990) Successful Families: Assessment and Intervention. New York: W. W. Norton
Health/Competence Conflict Cohesion Leadership Emotional Expressiveness
Family Environment Scale (FES)
Social environment of the family, within an Interactionist framework.
Moos, R. & Moos, B. (1994). Family Environment Scale Manual: Development, applications, research (3rd ed.). Palo Alto, CA: Consulting Psychologist Press.
Relationship: Cohesion Expressiveness Conflict Personal Growth: Independence Achievement Orientation Intellectual-Cultural Orientation Active-Recreational Orientation Moral-Religious Emphasis System Maintenance: Organization Control
Family APGAR
Perception of the value of the family as a psychosocial support.
Smilkstein, G. (1978). The Family APGAR: A proposal for a family function test and its use by physicians. Journal of Family Practice, 6, 1231–1239.
Each item rated on a 4-point scale.
Adaptation Partnership Growth Affection Resolve
Self-report
Short Form: 40 items from across each subscale. Family Relationship Index (FRI): 30 items from the Cohesion, Expressiveness, and Conflict subscales. 5 questions rated on a 3-point scale.
Self-report
Assessment Instruments
Typical Administration Duration
Reading/ Age Level
15–20 minutes
287
Sample Items
Reliabilityy
Validityy
Availability
Age 12+
Individuals are accepted for what they are. We don’t say what we mean. We discuss who is responsible for household jobs. We are able to make decisions about how to solve problems. We express tenderness.
)))
)))
Available online at http://chipts. ucla. edu/ assessment/ IB/Lis
Full FAM ¼ 20–45 minutes, Brief FAM ¼ 5–10 minutes per scale
Age 10+
We argue about who said what in our family. We tell each other about things that bother us. We can rely on family members to do their part. We agree about who should do what in our family. When our family gets upset, we take too long to get over it.
)))
)))
Psychological Assessment Resources, Inc.
10 minutes
Age 9+
Our family tries new ways of dealing with problems. There is no leadership in this family. We resent family members doing things outside the family. Family members are supportive of each other during difficult times.
)))
)))
Life Innovations, Inc.
10 minutes
Age 11+
There is a closeness in my family but each person is allowed to be special and different. Our family members would rather do things with other people than together. Our family is good at solving problems together. We all have a say in family plans. We argue a lot.
))
))
In primary citation
20–40 minutes
Age 12+
Family members really help and support one another. Family members often keep their feelings to themselves. If there’s a disagreement in our family, we try hard to smooth things over and keep the peace. Family members have strict ideas about what is right and wrong. We feel it is important to be the best at whatever you do.
))
))
Consulting Psychologists Press, Inc.
Less than 5 minutes
Age 10+
I am satisfied that my family accepts my wishes to take on new activities or make changes in my lifestyle. I am satisfied with the way my family expresses affection and responds to my feelings, such as anger, sorrow, and love.
))
))
In primary citation
y
Key for reliability and validity information: ¼ substantial evidence, good psychometrics )) ¼ some evidence, variable psychometrics across studies or subscales ) ¼ little evidence, poor or unavaliable psychometrics )))
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Table 11.1 (continued) Instrument
Focus
Source
Scales
Format
Source of Information
Instruments with limited clinical and research support but designed for late-life families Checklist of Family Relational Abilities (CFRA)
Family’s relational skills in domains relevant to the care of ill patients.
Wilkins, V. M., Quill, T. E., & King, D. A. (2009). Assessing families in palliative care: A pilot study of the Checklist of Family Relational Abilities. Journal of Palliative Medicine, 12, 517– 519.
Attachment Bonds Openness of Communication Regarding the Current Illness Collaborative Decision Making Regarding the Current Illness Overall Level of Family Relational Abilities
3 domain reted on 3- or 4-point descriptive anchors; 4-point overall rating of relational abilities.
Clinician rated
Paternalism and Respect for Autonomy
Attitudes regarding filial obligation and the relative importance of parental autonomy.
Cicirelli, V.G. (1992). Family caregiving: Autonomous and paternalistic decision making. Newbury Park, CA: Sage Publications, Inc.
Paternalism Independent autonomy Shared autonomy
30 items/scale rated on a 4-point scale.
Self-report
Hamon Filial Responsibility Scale
Filial responsibility expectations for emotional, instrumental, contact, and communication support to older parents.
Hamon, R.R., & Blieszner, R. (1990). Filial responsibility expectations among adult child-older parent pairs. Journals of Gerontology: Psychological Sciences, 45, P110–112.
Overall breadth of felt responsibility
16 items rated on a 4-point scale.
Self-report
Intergenerational Ambivalence
Conflicting attitudes or emotions towards family members or family relationships.
Luescher, K. & Pillemer, K. (1998). Intergeneration ambivalence. A new approach to the study of parent-child relations in later life. Journal of Marriage and the Family, 60, 413–425.
Positive feelings or relationship characteristics
6 items rated on 4-point scale.
Self-report
48 general preference items rated on a 5-point scale; 358 specific preference items answered yes/no, with the exception of some that are open-ended.
Selp-report
Negative feelings or relationship characteristics
Willson, A.E., Shuey, K. M., & Elder, G.H. (2003). Ambivalence in the relationship of adult children to aging parents and inlaws. Journal of Marriage and the Family, 65, 1055–1072. Prereferences for Everyday Living Inventory (PELI)
Psychosocial preferences of older adults.
Carpenter, B. D., Van Haitsma, K., Ruckdeschel, K., & Lawton, M. P. (2000). The psychosocial preferences or older adults: A pilot examination of content and structure. The Gerontologist, 40, 335–348.
Social Contact Growth Activities Diversionary Activities Self Dominion Enlisting Others in Care
Assessment Instruments
Typical Administration Duration
Reading/ Age Level
289
Sample Items
Reliabilityy
Validityy
Availability
1–2 minutes, but based on previous interactions with the family
n/a
Openness of Communication Regarding the Current Illness: ___ Communication between all or nearly all family members is open and includes expression of emotional reactions to the illness. ___ Most family members discuss the illness openly but some individuals are excluded and/or family members avoid expression of emotional reactions. ___ Some family members discuss the facts of the illness but few family members are involved in the discussions and/or emotional reactions are not shared. ___ There is little if any discussion of the illness between family members.
)
)
In primary citation
60 minutes
Unspecified
No matter how much an elderly parent objects, the adult child should do whatever he or she thinks is best in the long run for the parent’s health.
))
))
In primary citation
When an elderly parent becomes forgetful about financial matters, the adult child should take over and run things as he or she thinks best. If an elderly parent of sound mind decides not to see the doctor about a chronic condition, the adult child should support the parent’s decision. If an elderly parent who is emotionally unstable wants to donate money to charity, the adult child should help the parent decide how much to give. 5 minutes
Unspecified
Rate the degree to which you agree that adult children should help their older parents in the following areas: Give emotional support. Give financial help. Live close to parent.
)
)
In primary citation
Less than 5 minutes
Unspecified
How much does he or she make you feel appreciated, loved, or cared for
)
))
In primary citation
))
))
Authors of primary citation
How often does he or she make too many demands for help and support?
20–25 minutes for general items, 60–90 minutes for general and specific items
8th grade+
General, followed by specific, items: A. Do you like to take a bath or shower at a specific time? 1. Which do you prefer, a bath or a shower? 2. How often do you like to take a bath or shower? B. Do you like animals? 1. What kind of animals do you like? 2. What kind of contact would you like to have with animals? C. Do you want to have family or friends involved in major decisions about your life, such as decisions about medical care, where you live, and decisions about your finances? 1. Which specific family members do you want to have involved in these kinds of decisions? 2. Which specific family members do you NOT want to have involved in these kinds of decisions?
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CHAPTER 11 Assessment with Late-Life Families
Family Adaptability and Cohesion Scales The Family Adaptability and Cohesion Scales-IV (FACES-IV; Olson, Gorall, & Tiesel, 2007) is a selfreport measure based on the Circumplex Model (Olson, 2000), which focuses on three domains of family functioning: communication; cohesion; and flexibility (previously known as “adaptability”). Only cohesion and flexibility are assessed with the FACES-IV. According to the model, healthy families balance both connectedness with independence, and stability with flexibility, and this balance is achieved with effective communication. The FACES-IV includes two scales to measure healthy family functioning (balanced cohesion, balanced flexibility), and four scales to measure unhealthy family functioning (disengaged, enmeshed, rigid, and chaotic). Olson and colleagues (2007) recommend using the FACES-IV as part of a larger assessment packet that includes both the Family Communication Scale (adapted from Barnes & Olson, 1989) and the Family Satisfaction Scale (Olson & Wilson, 1989). They also recommend using the self-report measures in combination with the corresponding observational measure, the Clinical Rating Scale (Thomas & Olson, 1993). One caution we might mention is that the self-report and observational measures frequently provide discrepant results (Olson, 2000), and it is not clear how best to combine results from these two tools. Additionally, how to combine scores across family members is not clear. Although the Circumplex Model has been applied to a diverse group of families, including single parent households, stepfamilies, and gay and lesbian couples (Olson et al., 2007), the newly developed FACES-IV has not. Moreover, the validation sample for the FACES-IV was homogeneous: approximately two-thirds of the sample was female, 90% was Caucasian, and the average age was 28 (Olson et al., 2007). Finally, some items may not be applicable for use with older families (e.g., “Children have a say in their discipline”). Therefore, in spite of the strong research support for the Circumplex Model with younger families, the utility of the FACES-IV with late-life and diverse families has yet to be determined.
Self-Report Family Inventory The Self-Report Family Inventory (SFI; Beavers & Hampson, 1990) is a measure of family functioning based on the Beavers Systems Model. This model includes two orthogonal dimensions: family health/ competence and family style. According to the model, healthy families are structured but also willing to alter their structure in response to developmental changes or specific stressors. In addition, family members are able to derive satisfaction both from within and from outside of their families, take responsibility for their actions, respect each other’s perspectives and choices, and resolve conflicts easily. In general, the SFI has good psychometric properties, although some subscales have low testeretest reliability. The SFI also has been used with a diverse group of families, both in terms of culture and structure (Beavers & Hampson, 2003). As of 2003, the SFI had been translated into nine languages and used in 15, primarily European, countries. In spite of these strengths, the SFI has not been used with late-life families, and some items may need to be removed or adapted for use with this population (e.g., “In our home, we feel loved”). Another potential limitation is that some items are used for more than one subscale, leading to intercorrelations among subscales. Finally, Beavers and Hampson recognize that family members often disagree about their perceptions of their family and thus end up with different scale scores; examining the pattern of scores within families is presumably of some clinical utility. Yet research on the best way to combine various ratings within a family is limited.
Family Environment Scale The Family Environment Scale (FES; Moos & Moos, 1994) was developed from an interactionist framework with the purpose of describing the social environment of the family. As such, although the
Assessment Instruments
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constructs tapped by the FES overlap with some of those in other instruments, the underlying focus of the FES is on how family members relate to and behave with one another, all within the larger social context. Families are assessed on three dimensions, within which there are a number of subscales: relationship (cohesion, expressiveness, and conflict subscales); personal growth (independence, achievement orientation, intellectual-cultural orientation, active-recreational orientation, and moralreligious emphasis); system maintenance (organization and control). In addition to the long form of the FES, other forms enable assessment of perceptions of the current (real form), wished for (ideal form), and expected (expectations form) family. A short form also exists as a subset of items from each subscale. An even briefer form, the Family Relationships Index (FRI), includes just three subscales (cohesiveness, expressiveness, and conflict). The FES provides a comprehensive family assessment that is quite different in terms of some aspects of its content than the other instruments in this section. For instance, its attention to interest in political and cultural engagement places the family squarely in a larger social context, which may be valuable information when working with late-life families. Still, use of the instrument with late-life families and diverse families has been limited. Another disadvantage is the instrument’s relative length, although users could isolate specific subscales of interest. Moreover, in recent years there has been some debate about the reliability of some subscales, perhaps highlighting the measurement error inherent in true/false items. This has been particularly true in research with families from diverse ethnic and cultural backgrounds, e.g., Puerto Ricans, Vietnamese (Munet-Vilaro & Egan, 1990). In addition, although factor analytic studies have consistently found 2e3 solutions, these factors have not usually mapped onto the three dimensions proposed by the scale’s authors. Therefore, for researchers using the FES it is important to calculate and report reliability indices for each sample and to consider how unstable validity might affect associations with other dependent and independent variables. Likewise, clinicians may need to keep in mind how low reliability and validity might cloud interpretation and prediction.
Family APGAR Based on the brief assessment used to judge the health of newborns, the Family APGAR (Smilkstein, 1978) is intended to provide an efficient way to characterize the “health” of the family. The scale consists of five questions posed to family members about their satisfaction with family relationships. Questions address perceptions of the family in five domains: adaptation (use of resources for problem solving when the family is under stress); partnership (sharing of decision-making and responsibilities); growth (mutual support and guidance to encourage maturation); affection (expressions of love and caring); and resolve (commitment of time, space, and wealth). It is important to keep in mind that items are rated in terms of a person’s satisfaction with family functioning. Therefore, the Family APGAR score indicates subjective contentment with family functioning, not family functioning per se. For instance, a family may not communicate much about problems, and a respondent may be satisfied with that, even if it may not be helpful to the family from an outsider’s perspective. Scale content covers many of the same constructs addressed in lengthier instruments, and its brevity makes it easy to use for repeated assessments. In addition, the psychometrics of the instrument are generally sound (Smilkstein, Ashworth, & Montano, 1982), although there have been some questions about validity (Gardner et al., 2001), and the scale has not been used extensively outside of health care contexts or with diverse samples (including families beyond those with young children). The scale’s developer has recommended that a 5-point response scale provides greater discriminatory power and should be used for research purposes, while the original 3-point scale is sufficient for clinical use (Smilkstein, 1993). A number of authors have pointed out the potential utility of this scale when working with older adults (e.g., Burke & Laramie, 2004; Ebersole, Hess, Touhy, & Jett, 2005) and, because of its efficiency, this scale may be useful with further validation.
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Section II: Instruments with Support for Use with Late-Life Families Checklist of Family Relational Abilities The Checklist of Family Relational Abilities (CFRA; Wilkins, Quill, & King, 2009, see Appendix B) is one of the more recently developed instruments available to assess the family system. A clinicianrated index, the CFRA enables clinicians to gauge a family’s readiness to manage key tasks in a health care situation. Although it was developed to assess families in a particular clinical context (i.e., palliative care), it is based on some of the same theoretical foundations as other scales and taps overlapping constructs. The instrument is based on an epigenetic model of family relational functioning (Wynne, 1984), which takes a developmental perspective and cites the formation of attachment bonds as an initial foundation upon which more complex relational abilities (e.g., open communication, collaborative decision-making) are based. These skills come to bear when families are faced with serious illness in a family member, specifically when they need to talk about and decide upon a plan of care. Attachment, communication, and problem solving are rated on descriptively anchored scales. The checklist also includes a 4-point ranking of overall functioning, with an indication for family intervention. With that information, clinicians may be able to tailor information and decisions for a family, and be better prepared for how to interact with them when presenting treatment options and decisions. This instrument’s strengths are its brevity and attempt to provide a concise, objective assessment that could assist any provider on an interdisciplinary care team. The mean age of participants in the pilot validation sample was 58 (SD ¼ 12 years, range ¼ 39e81) and included many different family relations (spouses, adult children, siblings, and in-laws), suggesting relevance to late-life families. Still, the scale was developed based on just 13 family members, mostly Caucasian, suggesting additional validation is clearly needed. Nevertheless, the instrument was developed by a group of clinicians and researchers with extensive experience working with late-life families in a health care context, and the tool holds promise.
Paternalism and Respect for Autonomy As part of research focused on family functioning in late life, Cicirelli (1992) developed two scales to assess beliefs about paternalism and respect for autonomy in family caregiving. These scales, developed specifically for use with adult children and older parents, are useful to measure the extent to which older parents and their adult children agree about who should make decisions about parent care. Elements of incongruence may indicate the potential for discord in the family when care coordination is needed, as beliefs about autonomy and paternalism are likely antecedents to how family members actually behave when older adults need assistance. Similarly, incongruence could indicate points for intervention to help the family be better prepared for upcoming decisions. The Paternalism scale consists of brief scenarios that inquire about the extent to which people believe adult children know what is best for an older parent and should be able to force a parent to accept decisions made for them. Attitudes reflect a continuum from direct paternalism (i.e., it is acceptable for adult children to intervene in parents’ decisions without the parents’ request or consent) to paternalism by default (i.e., it is acceptable for adult children to intervene when parents are indifferent about making their own decisions). Scenarios in the Respect for Autonomy scale address both negative autonomy (i.e., refraining from interfering with a parent’s decisions) and positive autonomy (i.e., actively promoting a parent’s decision-making). Two factor-derived subscales include Independent Autonomy (parent making decisions independently) and Shared Autonomy (parent making decisions with adult children). These scales may be of interest to researchers who are exploring attitudinal congruence across generations as either independent variables (e.g., Is congruence related to choices that parents and
Assessment Instruments
293
children make or how they interact when making decisions?) or dependent variables (e.g., Is gender or geographical proximity or communication style predictive of attitudinal congruence?). Likewise, these scales may be useful to clinicians for pinpointing potential areas of conflict and tailoring family education or treatment. To offer a caveat, however, the scales were developed with a relatively homogeneous, Caucasian sample and have not been widely used since their original publication.
Hamon Filial Responsibility Scale The Hamon Filial Responsibility Scale (HFRS; Hamon & Blieszner, 1990) is a brief, self-report instrument designed to assess expectations regarding care that adult children should provide to their aging parents. The scale is designed to provide a comprehensive assessment of filial obligations and addresses emotional, instrumental, contact, and communication responsibilities. A common way of using the HFRS is to compare perceived obligations across generations in order to highlight points of agreement and disagreement. Incongruencies may indicate areas of potential conflict that could be addressed in family education or therapy. Limited psychometric properties of the HFRS have been reported, though those that have are good. As with many instruments, validation samples have been restricted in their diversity. The scale is narrow in its purpose but is comprehensive in its content, and may be useful for examining this specific facet of family life.
Intergenerational Ambivalence Because of its importance in family functioning, we discuss intergenerational ambivalence, even though no one standard way to assess this construct has yet emerged. Intergenerational ambivalence is defined as the presence of contradictions in parentechild relationships that arise from conflicting normative expectations and/or conflicting emotions and attitudes about each other (Connidis & McMullin, 2002; Luescher & Pillemer, 1998). For example, an adult daughter may feel torn between a desire to provide support to her chronically ill mother and a desire to focus on her relationships with her husband and her children. Ambivalence is common in late-life relationships (Pillemer & Suitor, 2002; Willson, Shuey, & Elder, 2003) and is associated with diminished well-being and increased physiological response to stressors (Fingerman, Pitzer, Lefkowitz, Birditt, & Mroczek, 2008; Uchino, Holt-Lunstad, Uno, & Flinders, 2001). The presence of ambivalence may alert clinicians to a potentially difficult caregiving situation. Despite the clinical relevance, scales to measure intergenerational ambivalence have been used exclusively in research contexts. Direct measures of ambivalence include asking people if they have mixed feelings toward family members, or if they feel conflicted about their family relationships (Pillemer & Suitor, 2002; Pillemer et al., 2007). Indirect measures include asking questions about both positive and negative perceptions of intergenerational relationships and then calculating an ambivalence score that is a combination of responses to these questions (Fingerman, Chen, Hay, Cichy, & Lefkowitz, 2006; Fingerman et al., 2008; Thompson, Zanna, & Griffin, 1995; Willson et al., 2003; Willson, Shuey, Elder, & Wickrama, 2006). Psychometric information about these methods is limited. However, both direct and indirect measures have been used in ethnically, culturally, and nationally diverse samples (Fingerman et al., 2008; Lowenstein, 2007).
Preferences for Everyday Living Inventory The Preferences for Everyday Living Inventory (PELI; Carpenter, Van Haitsma, Ruckdeschel, & Lawton, 2000) is a tool that enables older adults to describe their priorities and preferences related to daily activities and care. We review this tool because it can be helpful to clinicians and family members as they plan for and implement care for an older adult. The instrument grew out of research and practice in long-term and home-based care settings, where the culture change movement has emphasized individualized care that reflects the values and wishes of care recipients.
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With its self-report format, the PELI enables older adults to describe a broad range of both general preferences (e.g., “Do you like to exercise?”) and specific likes and dislikes (e.g., “Do you have an interest in walking for exercise?”). The general questions fall into five empirically derived content domains: social contact; growth activities (personal growth and development); diversionary activities (leisure pursuits); self-dominion (personal expression in living environment and routine); and enlisting others in care. The PELI can be administered in its entirety, or in subsections, and the questions can be answered in a semi-structured interview or by self-report. Comprehensive information about an older adult’s psychosocial preferences may be used to tailor recreational and educational activities, to personalize a living environment, to individualize personal care routines, and to guide the extent of involvement by others in care. In our work with families, we have used the PELI to compare preferences articulated by older adults with presumed preferences estimated by their adult children (Carpenter, Lee, Ruckdeschel, Van Haitsma, & Feldman, 2006). Discrepancies between actual and presumed preferences then serve as a foundation for family education (Carpenter & Mulligan, 2009). Incongruencies about preferences (as with incongruencies on attitudes measured by other instruments in this review) provide information about family knowledge and can guide family intervention. The PELI is a relatively new instrument, and although its preliminary psychometric properties appear promising, it has been used to date with relatively homogenous samples of older adults receiving residential and home health care. The breadth of the instrument is both a strength and liability: the content coverage is extensive, but administration of the full instrument takes, on average, an hour. Older adults have responded favorably to the instrument, appreciating the respect the questions pay to their preferences, and family members and formal caregivers have reported enhanced knowledge upon reviewing PELI results. The scale is obviously focused in its purpose but does provide comprehensive information that can inform supportive services.
CASE STUDY Background Information Silvia Ramirez is a 73-year-old woman who was admitted to a rehabilitation center after a hip replacement following a fall outside her home. Silvia’s attending physician has concerns about her ability to return home, given two other recent falls and comorbidities including hypertension, diabetes, and severe arthritis in both knees. In addition, Silvia recently stopped driving due to worsening vision associated with macular degeneration. Discharge planning will include input from many disciplines at the rehabilitation center, and the staff psychologist, Dr Clarke, has been consulted to help clarify Silvia’s wishes and the ability of her family to offer Silvia support. Before talking with Silvia, Dr Clarke spoke with the physician to clarify the purpose of the consult, and with the social worker to gather preliminary information about the family and the discharge options that were being considered. Next, Dr Clarke visited with Silvia in her room, introduced himself, described the purpose of his visit, and obtained consent from Silvia to gather additional information from her and her adult children. Silvia was friendly and cooperative with the clinical interview and provided the following information as Dr Clarke drew a genogram with Silvia’s input. According to Silvia, she has been living in California since she emigrated from Mexico 20 years ago. Her husband passed away two years ago after living with Alzheimer’s disease for seven years, during which time Silvia was his primary caregiver. Since her husband’s death, Silvia has been living in the small house they shared. She said she manages all household responsibilities on her own, but acknowledged increasing difficulty getting up and down the stairs of her basement and finding things she puts down around the house because of her poor vision. Silvia has been a homemaker her whole life, and her current income comes solely from her husband’s small pension and Social Security benefits. Medicare covers most of her medical costs and prescriptions. Silvia spent the majority of their savings on care for her husband, so her resources are limited. She has considered selling her house, which she owns outright, and moving to an apartment, but she is afraid that money from the sale of her home would be inadequate over time.
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There are three adult children in the Ramirez family: Alicia, 51, lives in New York City; Carlos, 48, lives about 15 minutes away from Silvia; and Ana, 42, lives about an hour away with her two children. In terms of her own family of origin, Silvia is the youngest of five siblings, but only two of her siblings are still living. Her older brother, Luis, lives in Mexico, and her younger sister, Maria, lives about 10 minutes away from Silvia. Silvia describes her relationship with her sister as very close. They are both recently widowed. In addition to her family, Silvia has close friends in her neighborhood and church, where she volunteers regularly. With Silvia’s permission, Dr Clarke tried to contact all three of her children by telephone to gather additional information. He was unable to reach Alicia despite leaving several messages; he talked with Carlos one afternoon when he was visiting his mother; and he spoke with Ana briefly on the telephone. According to Carlos, both he and Ana understand the concerns of the physician and have considered asking Silvia to move in with them. Carlos said his mother would be reluctant to live with him because he is gay and lives with his partner of 12 years. For her part, Ana does not think she has the time or energy to care for her mother. She is a single mother of two school-aged children, and she is currently working two jobs. Moreover, Ana has sought treatment for depression in the past, and she is concerned about becoming depressed again if she takes on the added responsibility of providing a home to her mother. According to Carlos, relations are strained between everyone and Alicia, who “left us to move east.” Silvia said she does not want to live with any of her children and prefers to stay in her own home, although she would consider living with Ana if necessary. With this background, Dr Clarke decided it would be useful to obtain standardized assessments of some family features to round out his understanding of the family and to offer more targeted recommendations to the family and the treatment team about how best to support the Ramirez family.
Assessment Targets and Instruments Dr Clarke is interested in getting more detailed information from each member of the Ramirez family regarding current patterns of support within the family and expectations regarding filial responsibilities. He has each family member complete the Family Assessment Device (FAD) to gather information about family functioning, and has a separate interview with each family member. In preparing his consultation report, he also rates the family on the Checklist of Family Relational Abilities (CFRA) based on his clinical interviews and observations of family interactions.
Case Analysis and Summary The Ramirez family has many features that characterize modern, late-life families. Silvia has outlived her husband and now survives on a fixed income, limiting her ability to pay for in-home supportive services. However, she has a wide network of family and friends who are, to varying degrees, willing and able to help her. Within her family, Silvia’s close relationship with her sister is a powerful source of emotional support, although her sister is not able to provide much practical assistance because of her own physical limitations. Her children, meanwhile, have their own busy lives, and while they are mostly eager to help Silvia in whatever way they can, they wonder how they will balance care with their other responsibilities. Equally important, everyone in the family is feeling stressed about decisions regarding Silvia’s placement, decisions that need to be made soon. All this is taking place in a family that has deep ties to its Hispanic culture. Silvia feels the most connection to her cultural heritage and in fact visits her curandero, or folk healer, for medical care. Carlos and Ana feel strong filial obligations toward their mother and identify with some features of Mexican culture, though not as strongly as their mother. Interpretation of the FAD suggested mostly agreement within the family about its relatively good functioning, with some notable discrepancies in opinion. Most obviously, Alicia did not return the FAD. Her siblings said they were not surprised, as Alicia had been distant from the family for years, in terms of both geography and contact. In fact, both siblings noted that they had made ratings on the FAD without considering Alicia; as Ana said, “If I included her, my ratings would have been a lot worse. She just doesn’t contribute and makes things hard for the rest of us with her criticism.” In contrast, Silvia seemed to protect Alicia, excusing her behavior by noting “how busy she is with her important job.” When pressed, however, Silvia acknowledged that Alicia has not been involved much in the family, even missing last summer’s family reunion. The remaining family members agreed that their family is comfortable expressing a range of emotions, that those emotions tend to be reasonable and appropriate for the circumstances, and that the family is able to handle both routine and emergent situations that require family collaboration. Silvia and Ana said they felt family members took an active interest in each other’s lives and respected their activities and choices, although Carlos’s view of the family in this area was less positive. He explained that his sexual orientation continued to cause uneasiness in the family, obvious from his mother’s vocal prayers for him and his sister’s concerns about the influence Carlos and his partner might have on her children.
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Still, all family members felt communication in the family was open regarding everyday matters, if not more emotional topics. In addition, they felt people in the family were clear and direct in their communication and said what they needed to say to the right person, rather than talking behind their back. Finally, there was general agreement that the family’s biggest challenge was in the area of problem solving. Silvia, Carlos, and Ana all felt that the family was often disorganized and stuck when action was needed. They said they had trouble formulating a list of alternatives, with pros and cons. Dr Clarke also noted the responses from Carlos and Ana regarding unclear roles and responsibilities in the family. Although Silvia believes everyone pitches in and fulfills his or her own jobs in the family, Carlos and Ana see more confusion and disorder in how things get done. The family has not had explicit conversations about who should be doing what tasks, and, when something is left unattended to, family members tend to ignore it or stew, without addressing it openly. In reviewing the results from the FAD, along with his multiple family interviews, Dr Clarke felt the Ramirez family was functioning relatively well but possessed some vulnerabilities that could make Silvia’s upcoming discharge more complicated. On the CFRA he rated the family as having strong, positive attachment bonds, capable of having open communication about Silvia’s current medical situation, able to reach mutually satisfying decisions, but still temporarily overwhelmed by what to do regarding discharge. Silvia, Carlos, and Ana appeared to have mostly positive feelings toward one another and were capable of sharing their thoughts, opinions, and feelings. They were likely to be interested and involved in discharge planning meetings with the staff, and seemed capable of participating in these conversations with openness and emotional maturity. At the same time, Dr Clarke thought they might benefit from more assistance laying out a clear plan for Silvia’s discharge and putting that plan into action. He believed that, for this family, staff might need to be more active and forceful in helping the family generate options and weigh those options. Responsibilities for gathering information could be assigned to specific people in the family, with clear expectations about what information is needed and when. An explicit conversation about Silvia’s specific post-discharge needs and who could fulfill them would be important. According to everyone in the family, Alicia was not likely to offer much help, though she might be willing to provide financial support to Silvia. Carlos and Ana, meanwhile, would need to divide day-to-day caregiving roles, perhaps with complementary help from Silvia’s friends, church, and local service organizations. Keeping Silvia connected with her sister and folk healer was also a priority. Based on information from the assessment and interviews, in his consultation report to the staff and the Ramirez family Dr Clarke recommended several sessions of problem solving-focused family therapy. Goals of the brief therapy included: 1. Discuss results of the FAD and the CFRA, noting family strengths but also potential vulnerabilities in diffuse roles and discrepancies in perceptions of family involvement. 2. Review Silvia’s preferences and values regarding housing and autonomy. Likewise, discuss each individual’s beliefs about filial obligations for parent care. 3. With input from the interdisciplinary care team, outline caregiving support that Silvia is likely to need and the discharge options that are available. 4. Weigh the discharge options and reach consensus on a plan. 5. Develop a post-discharge plan that outlines responsibilities for each person in the family and a timeline for specific tasks. 6. Reinforce the family’s already effective communication and problem solving skills. Dr Clarke conducted four sessions of family therapy, addressing each goal. In addition, he gathered information from the physician, occupational therapist, and physical therapist regarding Silvia’s progress and likely care needs at discharge. He also spoke with the social worker to clarify the range of discharge options available to Silvia, given her financial resources and available services in her local community. Finally, he facilitated a family meeting at which all disciplines met with the Ramirez family to finalize a discharge plan. Upon discharge, Silvia went to live for four weeks with Ana. After some emotional conversations, Ana agreed to let her children stay with Carlos and his partner on the weekends, to provide her with a break from childcare. In addition, Silvia spoke with members of her congregation, and the Women’s Group brought by occasional meals to Ana’s house for the family. Carlos was able to take time off work to transport Silvia to her outpatient appointments, including a visit to her folk healer. When Silvia returned to her own home, Carlos organized housekeeping services for her three times per week, and, after a frank discussion by telephone, Alicia agreed to pay for the service. Dr Clarke continued to check in with Silvia and Carlos during Silvia’s outpatient rehabilitative therapy appointments.
Instructions
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CONCLUSION With current instruments, assessment with late-life families is like cooking in someone else’s kitchen: they have all the basic implements and ingredients a kitchen should have but perhaps not exactly what you need. Many of the instruments described in this chapter have not been used with late-life families, and most have not been validated with ethnic/racial minority groups or diverse family structures. Still, it is striking that again and again, across different models of family functioning and different assessment instruments, similar constructs appear useful for differentiating healthy from unhealthy families. Some consensus appears to be emerging about what makes for optimal family functioning, despite the diversity of families, and despite the different methods that are currently available for measuring it. Much work needs to be done, particularly with late-life families; we hope this chapter encourages clinicians to think carefully about how to create and adapt tools, and prompts researchers to begin the arduous but critical process of validating instruments specifically for this group.
APPENDIX A: FAMILY ASSESSMENT DEVICE (RYAN et al., 2005)
INSTRUCTIONS: This assessment contains a number of statements about families. Read each statement carefully, and decide how well it describes your family. You should answer according to how you see your family. For each statement there are four (4) possible responses: Strongly Agree (SA)
Check SA if you feel that the statement describes your family very accurately.
Agree (A) Disagree (D)
Check A if you feel that the statement describes your family for the most part. Check D if you feel that the statement does not describe your family for the most part.
Strongly Disagree (SD)
Check SD if you feel that the statement does not describe your family at all.
These four responses will appear below each statement like this: 41. We are not satisfied with anything short of perfection. _______SA
_______A
_______D
_______SD
_______
The answer spaces for statement 41 would look like this. For each statement, there is an answer space below. Do not pay attention to the blanks at the far right-hand side of each space. They are for office use only. Try not to spend too much time thinking about each statement, but respond as quickly and as honestly as you can. If you have difficulty, answer with your first reaction. Please be sure to answer every statement and mark all your answers in the space provided below each statement. 1. Planning family activities is difficult because we misunderstand each other. ____SA ____A ____D ____SD 2. We resolve most everyday problems around the house. ____SA ____A ____D ____SD
____ ____
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3. When someone is upset the others know why. ____SA ____A ____D ____SD 4. When you ask someone to do something, you have to check that they did it. ____SA ____A ____D ____SD 5. If someone is in trouble, the others become too involved. ____SA ____A ____D ____SD 6. In times of crisis we can turn to each other for support. ____SA ____A ____D ____SD 7. We don’t know what to do when an emergency comes up. ____SA ____A ____D ____SD 8. We sometimes run out of things that we need. ____SA ____A ____D ____SD 9. We are reluctant to show our affection for each other. ____SA ____A ____D ____SD 10. We make sure members meet their family responsibilities. ____SA ____A ____D ____SD 11. We cannot talk to each other about the sadness we feel. ____SA ____A ____D ____SD 12. We usually act on our decisions regarding problems. ____SA ____A ____D ____SD 13. You only get the interest of others when something is important to them. ____SA ____A ____D ____SD 14. You can’t tell how a person is feeling from what they are saying. ____SA ____A ____D ____SD 15. Family tasks don’t get spread around enough. ____SA ____A ____D ____SD 16. Individuals are accepted for what they are. ____SA ____A ____D ____SD 17. You can easily get away with breaking the rules. ____SA ____A ____D ____SD 18. People come right out and say things instead of hinting at them. ____SA ____A ____D ____SD 19. Some of us just don’t respond emotionally. ____SA ____A ____D ____SD 20. We know what to do in an emergency. ____SA ____A ____D ____SD 21. We avoid discussing our fears and concerns. ____SA ____A ____D ____SD 22. It is difficult to talk to each other about tender feelings. ____SA ____A ____D ____SD 23. We have trouble meeting our bills. ____SA ____A ____D ____SD 24. After our family tries to solve a problem, we usually discuss whether it worked or not. ____SA ____A ____D ____SD 25. We are too self-centered. ____SA ____A ____D ____SD 26. We can express feelings to each other. ____SA ____A ____D ____SD 27. We have no clear expectations about toilet habits. ____SA ____A ____D ____SD 28. We do not show our love for each other. ____SA ____A ____D ____SD
____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____
Instructions 29. We talk to people directly rather than through go-betweens. ____SA ____A ____D ____SD 30. Each of us has particular duties and responsibilities. ____SA ____A ____D ____SD 31. There are lots of bad feelings in the family. ____SA ____A ____D ____SD 32. We have rules about hitting people. ____SA ____A ____D ____SD 33. We get involved with each other only when something interest us. ____SA ____A ____D ____SD 34. There’s little time to explore personal interests. ____SA ____A ____D ____SD 35. We often don’t say what we mean. ____SA ____A ____D ____SD 36. We feel accepted for what we are. ____SA ____A ____D ____SD 37. We show interest in each other when we can get something out of it personally. ____SA ____A ____D ____SD 38. We resolve most emotional upsets that come up. ____SA ____A ____D ____SD 39. Tenderness takes second place to other things in our family. ____SA ____A ____D ____SD 40. We discuss who is to do household jobs. ____SA ____A ____D ____SD 41. Making decisions is a problem for our family. ____SA ____A ____D ____SD 42. Our family shows interest in each other only when they can get something out of it. ____SA ____A ____D ____SD 43. We are frank with each other. ____SA ____A ____D ____SD 44. We don’t hold to any rules or standards. ____SA ____A ____D ____SD 45. If people are asked to do something, they need reminding. ____SA ____A ____D ____SD 46. We are able to make decisions about how to solve problems. ____SA ____A ____D ____SD 47. If the rules are broken, we don’t know what to expect. ____SA ____A ____D ____SD 48. Anything goes in our family. ____SA ____A ____D ____SD 49. We express tenderness. ____SA ____A ____D ____SD 50. We confront problems involving feelings. ____SA ____A ____D ____SD 51. We don’t get along well together. ____SA ____A ____D ____SD 52. We don’t talk to each other when we are angry. ____SA ____A ____D ____SD 53. We are generally dissatisfied with the family duties assigned to us. ____SA ____A ____D ____SD 54. Even though we mean well, we intrude too much into each others’ lives. ____SA ____A ____D ____SD
299 ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____ ____
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55. There are rules about dangerous situations. ____SA ____A ____D 56. We confide in each other. ____SA ____A ____D 57. We cry openly. ____SA ____A ____D 58. We don’t have reasonable transport. ____SA ____A ____D 59. When we don’t like what someone has done, we tell them. ____SA ____A ____D 60. We try to think of different ways to solve problems. ____SA ____A ____D
____SD
____
____SD
____
____SD
____
____SD
____
____SD
____
____SD
____
Note. See Ryan et al. (2005) for scoring instructions, a case study using the instrument, and norms from a variety of patient groups and cultures.
APPENDIX B: CHECKLIST OF FAMILY RELATIONAL ABILITIES (WILKINS et al., 2009)
For each category below, mark the best description of the family you are working with. The term “family members” is used to include the patient as well as any other involved individual who has biological, legal or emotional ties to the patient. Attachment Bonds ________ Strong, positive bonds of affection are apparent between all or nearly all family members. ________ Attachment bonds appear to be weak, ambivalent or “mixed” (i.e., both positive bonds and conflictual relationships in the family). ________ Intense conflict or “wounded” relationships are apparent between most or all family members. Openness of Communication Regarding the Current Illness ________ Communication between all or nearly all family members is open and includes expression of emotional reactions to the illness. ________ Most family members discuss the illness openly but some individuals are excluded AND/OR family members avoid expression of emotional reactions. ________ Some family members discuss the facts of the illness but few family members are involved in the discussions AND/OR emotional reactions are not shared. ________ There is little if any discussion of the illness between family members. Collaborative Decision-Making Regarding the Current Illness ________ Most or all family members participate in decision-making and most seem satisfied with decisions that are made. ________ Decisions are made by a minority of family members (e.g., the patient alone or one or two family members) but others accept or have grown to accept the decisions. ________ Decisions are made by a minority of family members, causing others to feel left out and unsatisfied with the decisions on an ongoing basis. ________ The family has great difficulty making decisions AND/OR there is serious, ongoing conflict about decisions that are made.
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Overall Level of Family Relational Abilities Circle the number below which best describes the overall capabilities and needs of the family: 4
“Naturally Resilient”: Predominately strong, positive bonds of attachment; clear and open communication; effective, collaborative decision-making (LITTLE IF ANY FAMILY INTERVENTION NEEDED).
3
“Overwhelmed”: Predominately strong relational abilities but temporarily stymied by intensity and/or complexity of the patient’s situation (BRIEF FAMILY SUPPORT MAY HELP ENGAGE NATURAL ABILITIES). “Closed” or “Fixed”: Significant difficulties with communication and/or decision-making (TARGETED INTERVENTION OR FAMILY CONSULTATION MAY HELP OPEN COMMUNICATION AND/OR FACILITATE DECISION-MAKING). “Wounded”: Damaged bonds of attachment, intensely negative or conflictual communication and/or decision-making (FAMILY THERAPY INDICATED TO ADDRESS LONGSTANDING GRIEVANCES BETWEEN FAMILY MEMBERS).
2 1
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Carpenter, B. D., Lee, M., Ruckdeschel, K., Van Haitsma, K. S., & Feldman, P. H. (2006). Adult children as informants about parent’s psychosocial preferences. Family Relations, 55, 552e563. Cicirelli, V. G. (1992). Family caregiving: Autonomous and paternalistic decision-making. Newbury Park, CA: Sage Publications, Inc. Cohen, S., & Wills, T. A. (1985). Stress, social support, and the buffering hypothesis. Psychological Bulletin, 98, 310e357. Connidis, I. A. (2001). Family ties and aging. Thousand Oaks, CA: Sage Publications, Inc. Connidis, I. A., & McMullin, J. A. (2002). Ambivalence, family ties, and doing sociology. Journal of Marriage and Family, 64, 594e601. Ebersole, P., Hess, P., Touhy, T., & Jett, K. (2005). Gerontological nursing and healthy aging. St. Louis, MO: Elsevier Mosby. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster Family Assessment Device. Journal of Marital & Family Therapy, 9, 171e180. Feetham, S. (1991). Conceptual and methodological issues in research of families. In A. Whall, & J. Fawcett (Eds.), Family theory development in nursing: State of the science and art (pp. 55e68). Philadelphia, PA: F.A. Davis. Fingerman, K. L. (2001). Aging mothers and their adult daughters: A study in mixed emotions. New York, NY: Springer Publishing Co. Fingerman, K. L., & Bermann, E. (2000). Applications of family systems theory to the study of adulthood. International Journal of Aging & Human Development, 51, 5e29. Fingerman, K. L., Chen, P.-C., Hay, E., Cichy, K. E., & Lefkowitz, E. S. (2006). Ambivalent reactions in the parent and offspring relationship. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 61B, P152eP160. Fingerman, K. L., Pitzer, L., Lefkowitz, E. S., Birditt, K. S., & Mroczek, D. (2008). Ambivalent relationship qualities between adults and their parents: Implications for the well-being of both parties. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 63B, P362eP371. Florsheim, P., & Benjamin, L. S. (2001). The Structural Analysis of Social Behavior Observational Coding Scheme. In P. K. Kerig, & K. M. Lindahl (Eds.), Family observational coding systems: Resources for systemic research (pp. 127e150). Mahwah, NJ: Lawrence Erlbaum Associates Publishers. Ganong, L., & Coleman, M. (2006). Obligations to stepparents acquired in later life: Relationship quality and acuity of needs. Journals of Gerontology: Series B: Psychological Sciences and Social Sciences, 61B, S80eS88. Gardner, W., Nutting, P. A., Kelleher, K. J., Werner, J. J., Farley, T., Stewart, L., et al. (2001). Does the Family APGAR effectively measure family functioning? Journal of Family Practice, 1, 19e25. Gironda, M., Lubben, J. E., & Atchison, K. A. (1999). Social networks of elders without children: Erratum. Journal of Gerontological Social Work, 31, 197. Glenn, N. D. (2004). Distinguishing age, period, and cohort effects. In J. T. Mortimer, & M. J. Shanahan (Eds.), Handbook of the life course (pp. 465e476). New York, NY: Springer. Hamon, R. R., & Blieszner, R. (1990). Filial responsibility expectations among adult childeolder parent pairs. Journals of Gerontology, 45, P110eP112. He, W., Sengupta, M., Velkoff, V. A., & DeBarros, K. A. (2005). 65þ in the United States: 2005. In Current population reports (U.S. Census Bureau) (pp. 23e209). Washington, DC: U.S. Government Printing Office. Henry, N. J. M., Berg, C. A., Smith, T. W., & Florsheim, P. (2007). Positive and negative characteristics of marital interaction and their association with marital satisfaction in middle-aged and older couples. Psychology and Aging, 22, 428e441. House, J. S., Umberson, D., & Landis, K. R. (1988). Structures and processes of social support. Annual Review of Sociology, 14, 293e318. Jones, S., & Fox, S. (2009). Generations online in 2009. Accessed 05.22.09. Knight, B., Robinson, G., Longmire, C., Chun, M., Nakao, K., & Kim, J. (2002). Cross cultural issues in caregiving for persons with dementia: Do familism values reduce burden and distress? Ageing International, 27, 70e94.
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Screening, Assessing and Intervening for Alcohol and Medication Misuse in Older Adults
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Kristen Lawton Barry, Frederic C. Blow University of Michigan Department of Psychiatry, and Department of Veterans Affairs National Serious Mental Illness Treatment Research and Evaluation Center (SMITREC), Ann Arbor, MI, USA
INTRODUCTION The misuse and abuse of alcohol, medications, and illicit drugs in older adults present unique challenges in terms of recognition, interventions, and determining the most appropriate treatment options. Substance use problems in this age group are often not recognized and, if recognized at all, are generally undertreated. Additionally, there are concerns in the field that the standard diagnostic criteria for abuse/dependence are difficult to apply to older adults, leading to underidentification. Substance misuse/abuse, in particular among elders, is an increasing problem. Older adults with these problems are a special and vulnerable population. From the standpoint of recognition, older adults are more likely than younger adults to seek services from their primary and specialty care providers, which opens the door to greater recognition and treatment for those who drink/use drugs at hazardous levels. Health care providers who work with geriatric patients have a unique opportunity to observe and treat the repercussions of alcohol, drug, and medication misuse problems. Therefore, the purpose of this chapter is to describe the state-of-the-art in terms of: (1) definitions of substance use risk (alcohol, drugs, medications); (2) pertinent screening instruments and techniques; (3) elements of assessments for older adults; (4) screening and assessment for physical, mental, and functional health; and (5) use of brief interventions, brief treatments, and formal specialized treatments.
PREVALENCE OF ALCOHOL AND DRUG USE/MISUSE/ABUSE Alcohol Over a number of years, community surveys have estimated the prevalence of problem drinking among older adults to range from 1 to 16% (Adams, Barry, & Fleming, 1996; Barry, 1997; Fleming, Manwell, Barry, Adams, & Stauffacher, 1999; Menninger, 2002; Moore et al., 1999; Office of Applied Studies, 2004, 2007). These rates vary widely depending on the definitions of older adults, at-risk and problem drinking, alcohol abuse/dependence, and the methodology used in obtaining samples. The National Survey on Drug Use and Health (2002e2003) found that, for individuals age 50þ, 12.2% were heavy drinkers, 3.2% were binge drinkers, and 1.8% used illicit drugs (Huang et al., 2006; Office of Applied Studies, 2007). The 2005e2006 National Survey on Drug Use and Health showed a significant level of Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10012-0 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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binge drinking among those age 50 to 64 (Blazer & Wu, 2009). They also found that 19% of the men and 13% of the women had two or more drinks a day, considered heavy or “at-risk” drinking. The survey also found binge drinking in those over 65, with 14% of men and 3% of women engaging in binge drinking. Estimates of alcohol problems are much higher among health care-seeking populations, because problem drinkers are more likely to seek medical care (Oslin, 2004). Early studies in primary care settings found 10e15% of older patients met criteria for at-risk or problem drinking (Barry, CSAT, 1999; Callahan & Tierney, 1995). In a large primary care study of 5065 patients over 60, Adams, Barry, and Fleming (1996) found that 15% of the men and 12% of the women sampled regularly drank in excess of National Institute of Alcoholism and Alcohol Abuse limits, >7 drinks/week for women and >14 drinks/week for men; the guidelines recommend no more than one drink a day for both men and women over 65 [National Institute of Alcholism and Alcohol Abuse (NIAAA), 1995a,b]. These guidelines are consistent with some empirical evidence for risk-free drinking among older adults (Chermack, Blow, Hill, & Mudd, 1996). Clinicians who are finding fewer cases of problem drinkers and alcohol or drug disorders in their own practices may want to begin screening programs. Because patients with a previous history of problems with alcohol or other drugs are at risk for relapse, establishing a history of use can provide important clues for future problems. The health costs of untreated alcohol problems have been well described but may be even greater among the elderly, who are already at increased risk for many health problems. In terms of meeting criteria for abuse/dependence, two studies in nursing homes reported that 29e49% of residents had a lifetime diagnosis of alcohol abuse or dependence, with 10e18% reporting active dependence symptoms in the past year (Joseph, Atkinson, & Ganzini, 1995; Oslin, Streim, Parmelee, Boyce, & Katz, 1997). In 2002, over 616,000 adults age 55 and older reported alcohol dependence in the past year (DSM-IV definition): 1.8% of those age 55e59; 1.5% of those age 60e64; and 0.5% of those age 65 or older (Office of Applied Studies, 2002). Although alcohol and drug/ medication dependence are less common in older adults when compared to younger adults, the mental and physical health consequences are serious.
Medication Misuse Misuse of medications by older adults is perhaps a more challenging issue to identify. Despite high rates of medication use among older adults, few studies have specifically examined the prevalence and nature of medication misuse and abuse in this population. The existing literature on this topic, while scant, indicates that medication misuse affects a small but significant minority of the elderly population. Older adults are at higher risk for inappropriate use of medications than younger groups. Adults aged 65 years and older comprise about 13% of the population, but account for 36% of all prescription medication in the United States (Cook, 1999). Older adults use more prescriptions and over-the-counter medications than other age groups and studies show that about a quarter of older adults use psychotherapeutic drugs, with 27% of all tranquilizer prescriptions and 38% of sedative hypnotics written for older adults. A relatively recent study found that 25% of older adults use prescription psychoactive medications that have abuse potential (Simoni-Wastila & Yang, 2006). There over 2 million serious adverse drug reactions yearly with 100,000 deaths per year. Adverse drug reactions are especially prominent among nursing home patients with 350,000 events each year (Gurwitz et al., 2000; Lazarou, Pomeranz, & Corey, 1998). A survey of social services agencies indicated that medication misuse affects 18e41% of the older clients served, depending on the agency (Schonfeld et al., 2009; Schonfeld, Rohrer, Zima, & Spiegel, 1994).
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In addition, prescription drug abuse has been the second most common type of substance abuse among older adults for a number of years (after alcohol abuse) (Finlayson & Davis, 1994; Holroyd & Duryee, 1997). Three percent of VA geropsychiatric inpatients were diagnosed with dependence or abuse disorders involving prescription drugs (Edgell, Kunik, Molinari, Hale, & Orengo, 2000); 5% of a community-based, high-risk elderly population were referred for prescription drug abuse (Jinks & Raschko, 1990); and 11% of patients at an outpatient geriatric psychiatry clinic were diagnosed with benzodiazepine dependence (Holroyd & Duryee, 1997). By 2020, the non-medical use of psychotherapeutic drugs among older adults is projected to increase from 1.2% (911,000) to 2.4% (2.7 million) (Colliver, Compton, Gfroerer, & Condon, 2006). Several aspects of prescription misuse and abuse among the elderly differ both quantitatively and qualitatively from those found in younger populations. Misuse and abuse of prescription drugs by older adults is not typically done to “get high” (Blow, Bartels, Brockmann, & van Citters, 2006). Problematic use by older adults is usually unintentional (Simoni-Wastila & Yang, 2006), and most abused medications are obtained legally (Blow et al., 2006).
Correlates of Prescription Drug Abuse in Older Adults There are a number of correlates that have been linked to prescription drug misuse/abuse. Female gender (Finlayson & Davis, 1994; Jinks & Raschko, 1990; Simoni-Wastila & Yang, 2006), social isolation (Jinks & Raschko, 1990; Simoni-Wastila & Yang, 2006), and a history of substance abuse or another mental health disorder (Jinks & Raschko, 1990; Simoni-Wastila & Strickler, 2004; Simoni-Wastila & Yang, 2006; Solomon, Manepalli, Ireland, & Mahon, 1993) are all associated with increased risk of problems related to medications. One study indicates that older adults with prescription drug dependence are even more likely than their younger counterparts to have a dual diagnosis (Solomon et al., 1993). Prolonged use of psychotropic medications, especially benzodiazepines, has been associated with depression and cognitive decline (Dealberto, McAvay, Seeman, & Berkman, 1997; Hanlon et al., 1998; Hogan, Maxwell, Fung, & Ebly, 2003). Benzodiazepine use is also positively correlated with confusion, falls, and hip fractures in the elderly (Leipzig, Cumming, & Tinetti, 1999). Further, the use of opiate analgesics can lead to increased sedation and impairment in vision, attention, and coordination among older patients (Ray, Thapa, & Shorr, 1993; Solomon et al., 1993). In addition to the concerns regarding the misuse of medications alone, combined alcohol and medication misuse has been estimated to affect up to 19% of older Americans (National Institute on Alcohol Abuse and Alcoholism, 1998). Substance abuse problems among elderly individuals often occur from misuse of over-the-counter and prescription drugs. Drug misuse can result from the overuse, underuse or irregular uses of either prescription or over-the-counter drugs. Misuse can relatively easily become abuse (Patterson & Jeste, 1999; Schonfeld et al., 2009).
Illicit Drugs The use of illicit drugs is relatively rare in the current cohort of older adults. The National Survey on Drug Use and Health (2002e2003) found that, for individuals age 50þ, 1.8% used illicit drugs (Huang et al., 2006; Office of Applied Studies, 2007). However, research suggests that the number of illicit drug users (and those with problems related to alcohol) in older adulthood is likely to increase due to the aging of the “baby boom” generation. Blow, Barry, Fuller, & Booth (2002) analyzed the National Health and Nutrition Examination Survey (NHANES) data which suggested that the Baby Boom cohort, as it continues to age, could maintain a higher level of alcohol consumption than in previous older adult cohorts. Consequently, a larger percentage of future older adults may have alcohol use patterns that place their health at risk.
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MENTAL AND PHYSICAL HEALTH RISKS ASSOCIATED WITH USE/MISUSE/ABUSE Drinking at hazardous levels increases the risk of hypertension (Chermack et al., 1996; National Institute of Alcholism and Alcohol Abuse, 1995) and may increase the risk of breast cancer (Baker, 1985; Rosin & Glatt, 1971) and diabetes (Vestal et al., 1977), among other medical conditions in this population. Hazardous drinking can significantly affect a number of other conditions in this age group (Fleming & Barry, 1992) including mood disorders and sleep, as well as general health functioning (Blow et al., 2000). Depression has been linked to relapse in drinking and increased alcohol intake. Blow et al. (2000) found a main effect of drinking status on general health, physical functioning, physical role functioning, pain, vitality, mental health, emotional role and social functioning, controlling for race and gender, with low-risk drinkers scoring better than abstainers and better than hazardous drinkers. Symptoms of harmful drinking are often less visible among older adults because they may be masked by social, medical, or psychological conditions. Tolerance of ethanol can be reduced by the physiological aging processes (Rosin & Glatt, 1971) and by health conditions common to old age (Baker, 1985). Comparable amounts of alcohol produce higher blood alcohol levels in older adults than in younger persons, and may exacerbate other health problems (Vestal et al., 1977). Drinking produces higher blood alcohol levels in older adults than in younger persons when comparable amounts of alcohol are drunk, and many problems common among older people, such as chronic illness, poor nutrition, and polypharmacy, may be exacerbated by even small amounts of alcohol (Rosin & Glatt, 1971; Vestal et al., 1977). What might be considered light or moderate drinking for individuals in their thirties may have multiple negative health effects in an older person. Therefore, clinicians who treat older patients need to assess alcohol use levels and be aware of health implications of their patients’ alcohol use. Practitioners from a variety of disciplines, including those who provide home health care and extended care, as well as those who manage community-based social programs for the elderly, can play a crucial role in detecting and treating alcohol problems in this age group. One of the challenges to all clinicians who work with older adults is meeting these goals within the context of a managed care environment, where providers are expected to deliver quality medical and mental health care across a wide variety of problems with greater time constraints. As more physical and mental health care is delivered within managed health care, the costs of treatment and the effectiveness of interventions for alcohol problems will benefit from new innovative technologies and techniques which require less provider intervention time and are more targeted to each patient’s particular set of symptoms and health patterns. Fleming et al. (1999) conducted a brief intervention trial to reduce hazardous drinking with older adults using brief advice in primary care settings. This study showed that older adults can be engaged in brief intervention protocols, the protocols are acceptable in this population, and there is a substantial reduction in drinking among the at-risk drinkers receiving the interventions. One procedure found to identify large numbers of heavy drinkers who are likely to be motivated to change is routine health and lifestyle screening in medical settings (Adams et al., 1996; Skinner, Holt, & Israel, 1981).
DEFINITIONS OF SUBSTANCE USE RISK IN OLDER ADULTHOOD The terms presented in this chapter are derived from both the clinical and research expertise of professionals in the field of addictions. The term alcohol use disorders includes the clinical problems
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of alcohol abuse and dependence. However, many older adults have alcohol problems without meeting any standardized criteria for abuse and/or dependence. In order to address the range of alcohol problems in older adults screening and assessment procedures need to focus on a range of drinking levels. Decisions regarding interventions and treatment may need to be made partly based on level of alcohol/medication use and misuse, and partly based on problems manifested regardless of amount used. To diagnose alcohol use disorders clinicians look for behavioral factors such as the inability to cut down or stop, social and emotional consequences such as family problems, and physiological symptoms such as insomnia, gastrointestinal pain, liver toxicity, tolerance (over time it takes more of the substance to feel an effect), and withdrawal. A limitation for the alcohol field, particularly in medical settings, is the lack of laboratory tests to make a definitive diagnosis of alcohol abuse or dependence. Liver function and other laboratory tests detect end organ damage but do not detect the primary disorder. Only about 20% of people with alcohol abuse or dependence have elevated serum gamma-glutamyl transferase (GGT; Babor, De La Fuente, Saunders, & Grant, 1989). Research has indicated a positive relationship between level of drinking (consumption) and severity of alcoholrelated problems. This relationship is often true for younger adults but is not as applicable for all older adults with alcohol-related problems. In older adults, problems with alcohol can occur with relatively low levels of use. Screening and intervention efforts should include both an evaluation of medical and psychosocial problems that can be related to alcohol and a determination of consumption levels. Because of the potential for interactions between alcohol and medications in this age group, the definitions of low-risk, at-risk, problem use, and abuse/dependence should always include an evaluation of medication use (prescription and over-the-counter) along with the use of alcohol. Additionally, it is important to understand the broad range of problematic use of prescription medications that can be found in this population. Culberson and Ziska (2008) provided a breakdown of the various types of medication misuse and abuse that can occur among older adults. Discussion of those definitions are included in the risk categories below.
Low-Risk Use Alcohol use that does not lead to problems is called low-risk use (see Case Study 1). Persons in this category can set reasonable limits on alcohol consumption and do not drink when driving a car or boat, operating machinery, or using contraindicated medications. They also do not engage in binge drinking (National Institute of Alcholism and Alcohol Abuse, 1995). In this age group, low-risk use of medications could include using an anti-anxiety medication for an acute anxiety state following the physician’s prescription with no use of alcohol, or drinking one drink three times/week without the use of any contraindicated medications.
Case Study 1 Marie Howell is a 67-year-old retired teacher who drinks one glass of wine when out to dinner with friends once or twice a week. She has a relatively large social network, walks in the mall with a friend three times/week for exercise, and is active in volunteer work in a literacy program. She has no family history of alcoholism and does not take contraindicated medications. She receives routine health care from a primary care physician and attends a senior center where she has contact with other health care personnel including a social worker and a nurse. Ms Howell would benefit from prevention messages regarding her alcohol use in the context of her overall health and well being. “I know that one of your goals is to prevent health problems. Your exercise program looks good. You continue to be active with friends and in the community. You have no family history of alcohol problems, are taking no medication to interfere with alcohol, and don’t exceed a glass of wine once or twice a week. These are all good things that you have been doing to stay as healthy as you can.”
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At-Risk Use At-risk use is use that increases the chances that a person will develop problems and complications related to the use of alcohol. These individuals consume more than 7 drinks/week, or drink in risky situations (see Case Study 2). They do not currently have health problems caused by alcohol but if this drinking pattern continues, problems may result. There are two types of medication misuse that may fit into at-risk use or problem use (below) depending on severity. The types are “misuse by the patient” and “misuse by the practitioner.” Misuse by the patient includes: taking more or less medication than prescribed; hoarding or skipping doses of a medication; use of medication for purposes other than those prescribed; and use of the medication in conjunction with alcohol or other contraindicated medications. Misuse by the practitioner includes: prescribing medication for an inappropriate indication; prescribing a dosage that is unnecessarily high; or failure to monitor or fully explain the appropriate use of a medication (Culberson & Ziska, 2008).
Case Study 2 Jack Hendrick is a 64-year-old executive with a large marketing firm. He is a hard-driving person who works long hours and has few hobbies and interests outside of work. Although the company has a policy that employees retire at 65, he has not planned what he will do. He is slightly overweight, does not exercise except for occasionally playing golf, and drinks two drinks/day during the week and three to four drinks/day on the weekends. He has no diagnosed health problems related to alcohol use but his wife worries about his drinking and would like him to spend more time in activities with her that do not involve alcohol. He has gone to a psychologist at his wife’s urging. The message from his psychologist would include a statement regarding his use of alcohol and concern about potential problems. “You indicated that, on average, you drink alcohol every day and drink two drinks at a time during the week and drink more than that on the weekends. You and I have talked about your stresses at work, your wife’s concerns about your use of alcohol and your own worries about retirement. National guidelines recommend that men your age drink no more than (seven drinks/week: no more than one/day). I am concerned that your pattern of alcohol use fits into the at-risk drinking category.”
Problem Use Problem use refers to a level of use that has already resulted in adverse medical, psychological, or social consequences as in Case Study 3. Although most problem drinkers consume more than the lowrisk limits, some older adults who drink smaller amounts may experience alcohol-related problems. As mentioned above, medication misuse can also fit into the problem use category. Assessment to determine severity is needed.
Case Study 3 Catherine Jones is a 70-year-old widow living alone in a small apartment in a large city. She has developed few interests and outside activities since her husband died four years ago. In a routine visit to her primary care clinic, the nurse practitioner asked some questions about her general health and Mrs Jones reported that she was tired all the time and, because she did not sleep well, she was using over-the-counter sleeping pills. When asked, she said that she generally drinks one glass of wine a day before dinner just as she and her husband did when they were younger. She had been taking prescription medicine for stomach pain for six months but the pain has not improved. The effect of alcohol is exacerbated by age, by the use of some medications for stomach pain like Zantac, and by over-the-counter sleeping pills. Her nurse practitioner discussed with her the potential problems of mixing some medications with alcohol, provided information about the senior center in her neighborhood and the name of a contact person at the center, and suggested she try the center for some activities and that she stop the use of alcohol since it could be starting to cause problems that would get worse
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with time.“I am concerned about your use of alcohol with the medications for your stomach and the sleeping pills. The stomach medicine you take and the sleeping pills can increase the effect of the alcohol. I’m also concerned that you may not have a lot of options to see other people and that can be pretty lonely. I’m giving you the number for the senior center in your neighborhood and the name of the person to call at the center. In the next month, I’d like you to stop the use of alcohol and the sleeping pills to see how you feel, and I’d like you to try out the senior center. I’ll see you in one month so we can determine together how things are going.” Mrs Jones felt that she would be able to follow these recommendations. The nurse practitioner made an appointment with her in one month to check on progress.
Alcohol and Other Drug Dependence Those who use at the level of alcohol dependence have a medical disorder characterized by loss of control, are preoccupied with alcohol, continue to use despite adverse consequences, and suffer physiological symptoms such as tolerance and withdrawal as in Case Study 4 (American Psychiatric Association, 1994). A wide range of legal and illegal substances can be addictive. Medication abuse involves medication use that results in diminished physical or social functioning; medication use in risky situations; and continued medication use despite adverse social or personal consequences (Culberson & Ziska, 2008). Dependence includes medication use that results in tolerance or withdrawal symptoms; unsuccessful attempts to stop or control medication use; and preoccupation with attaining or using a medication.
Case Study 4 Joe Thompson is a 68-year-old retired electrician. He has had chronic abdominal pain and unresolved hypertension for the past ten years. He has a history of alcohol problems and had one admission to alcohol treatment 15 years ago. Four years ago, after experiencing withdrawal symptoms during a hospital admission for a work-related injury, he again entered an alcohol treatment program. After two years of abstinence, Mr. Jackson began drinking again. He now drinks approximately five beers a day plus some additional liquor once a week. His physician and social worker in the primary care clinic are aware that this is a chronic relapsing disorder and continue to work with Mr Jackson to help him stabilize his medical conditions and find longer-term help for his primary alcohol dependence. “Mr Jackson, your high blood pressure and your stomach pains have not improved. The amount you are drinking can certainly interfere with them getting better and can make other physical and family problems worse. I know you’ve tried hard to deal with your alcohol problems and you kept those problems in check for a long time, but now they are getting in the way of your health and well-being again. I know it takes a lot to stay sober and that relapses can occur when stresses increase. I’m worried about your health and would like you to talk to someone from the alcohol program. Would you be willing to talk with them if we call and make the appointment together?”
SCREENING: ASKING THE FIRST QUESTIONS To be able to practice prevention and early intervention with older adults, clinicians need to screen for alcohol and alcohol/medication interaction problems. Screening can be done as part of a routine mental and physical health care and updated annually, before the older adult begins taking any new medications, or in response to problems that may be alcohol or medication related.
Alcohol The common signs and symptoms of alcohol problems in older adults are listed in Table 12.1. However, because of the relationship between alcohol consumption and health problems, questions about consumption (quantity and frequency of use) provide a method to categorize patients into
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Table 12.1 Signs and Symptoms of Alcohol and Medication Problems in Older Adults Alcohol anxiety blackouts, dizziness depression disorientation excessive mood swings falls, bruises, burns family problems financial problems headaches incontinence
increased tolerance to alcohol legal difficulties memory loss new difficulties in decision making poor hygiene poor nutrition seizures, idiopathic sleep problems social isolation unusual response to medications Medications
excessive worry about whether psychoactive medications are working extensive knowledge of and preference for a specific psychoactive medication excessive anxiety about the supply and timing of a medication continued use of a medication or refill requests after the indicated medical condition has been resolved complaints about physicians who refuse to prescribe a preferred medication or do not take symptoms seriously excessive sleeping changes in personal grooming or hygiene withdrawal from family, friends, and social activities (Adapted from Fleming & Barry, 1992) (Adapted from Blow & Barry 2001)
levels of risk for alcohol use. The traditional assumption that all patients who drink have a tendency to underreport their alcohol use is not supported by research (Babor et al., 1989). People who are not alcohol dependent often give accurate answers. Clinicians can get more accurate histories by asking questions about the recent past; embedding the alcohol use questions in the context of other health behaviors (i.e., exercise, weight, smoking, alcohol use); and paying attention to non-verbal cues that suggest the patient is minimizing use (i.e., blushing, turning away, fidgeting, looking at the floor, change in breathing pattern). Screening questions can be asked by verbal interview, by paper-and-pencil questionnaire, or by computerized questionnaire. All three methods have equivalent reliability and validity (Barry & Fleming, 1990; Greist et al., 1987). Any positive responses can lead to further questions about consequences. To successfully incorporate alcohol (and other drug) screening into clinical practice, it should be simple and consistent with other screening procedures already in place. Before asking any screening questions the following conditions are needed: (1) the interviewer needs to be friendly and non-threatening; (2) the purpose of the questions should be clearly related to their health status; (3) the patient should be alcohol free at the time of the screening; (4) the information should be confidential; and (5) the questions should be easy to understand. Screening questions can be used with the older adult who may have alcohol-related problems as well as to guide an interview with a concerned friend, spouse, or family member. In some settings (such as waiting rooms), screening instruments are given as self-report questionnaires, with instructions for the patient to discuss the meaning of the results with their health care provider.
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In addition to these general considerations, the following interviewing techniques can be used. Try to interview patients under the best possible circumstances. For patients requiring emergency treatment or who are severely impaired, it is best to wait until their condition has stabilized and they have become accustomed to the health setting where the interview is to take place. Look for signs of alcohol or drug intoxication. Patients who have alcohol on their breath or who appear intoxicated give unreliable responses. Consider conducting the interview at a later time. If this is not possible, make note of these findings on the patient’s record. If the alcohol questions are embedded in a longer health interview, a transitional statement is needed to move into the alcohol-related questions. The best way to introduce alcohol questions is to give the patient a general idea of the content of the questions, their purpose, and the need for accurate answers. The following is an illustrative introduction: “Now I am going to ask you some questions about your use of alcoholic beverages during the past year. Because alcohol use can affect many areas of health (and may interfere with certain medications), it is important to know how much you usually drink and whether you have experienced any problems with your drinking. Please try to be as accurate as you can be” (Center for Substance Abuse Treatment, 1998). This statement should be followed by a description of the types of alcoholic beverages typically consumed (e.g., “By alcoholic beverages we mean your use of wine, beer, vodka, sherry, and so on”). If necessary, include a description of beverages that may not be considered alcoholic (e.g., cider, low alcohol beer). Determinations of consumption are based on “standard drinks.” A standard drink is a 12 ounce bottle of beer, a 4 ounce glass of wine, or 11/2 ounces (a shot) of liquor (e.g., vodka, gin, whiskey). When using standardized alcohol screening questionnaires in an interview format, it is important to read the questions as written and in the order indicated. By following the exact wording, better comparability will be obtained between your results and those obtained by other interviewers. This section of the chapter will focus on four widely used screening instruments: the Michigan Alcoholism Screening Test-Geriatric version (MAST-G); its shortened version the SMAST-G; the CAGE; and the Alcohol Use Disorders Identification Test (AUDIT). The Michigan Alcoholism Screening Instrument-Geriatric Version (MAST-G) (see Figure 12.1) was developed at the University of Michigan (Blow et al., 1992a) as an elderly alcoholism screening instrument for use in a variety of settings. Psychometric properties of this instrument are superior to other screening tests for the identification of elderly persons with alcohol abuse/dependence. The MAST-G was the first major elderly-specific alcoholism screening measure to be developed with items unique to older problem drinkers. The MAST-G was developed in two phases: the pilot testing/ development phase and the validation phase. From various resources, a total of 94 items were developed and refined for the MAST-G. The initial items were pilot tested for wording and understandability using 125 adults over age 55 who were recruited from various community and clinical care locations. In addition to the MAST-G items, demographic data, several health questions, the CAGE, and the MAST were administered to all study participants so that comparisons could be made to these instruments. After pilot testing the original items, they were then administered to 840 individuals over age 55 (average age was 65.9 years; SD ¼ 7.5; range ¼ 55e91). Item reduction was accomplished by item analyses and by a factor analysis of items. Similar items tapping underlying dimensions from the factor analyses, and those items with very low or very high positive response rates, were removed. These procedures resulted in 32 items being retained for final validation. During the validation phase of the study, the reduced 32-item instrument was refined using a stratified sample of 290 aged subjects (the mean age was 66.1 years; SD ¼ 7.3) that included five groups: (1) those currently meeting criteria for alcohol dependence, but not in treatment; (2) those currently in treatment for alcoholism; (3) those with a previous history of alcoholism and currently in recovery; (4) social drinkers; and (5) abstainers. The sample was stratified by these groups to ensure
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No
1. After drinking have you ever noticed an increase in your heart rate or beating in your chest? ____
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2. When talking with others, do you ever underestimate how much you actually drink?
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3. Does alcohol make you sleepy so that you often fall asleep in your chair?
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4. After a few drinks, have you sometimes not eaten or been able to skip a meal because you didn’t feel hungry?
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5. Does having a few drinks help decrease your shakiness or tremors?
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6. Does alcohol sometimes make it hard for you to remember parts of the day or night?
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7. Do you have rules for yourself that you won’t drink before a certain time of the day?
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8. Have you lost interest in hobbies or activities you used to enjoy?
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9. When you wake up in the morning, do you ever have trouble remembering part of the night before?
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10. Does having a drink help you sleep?
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11. Do you hide your alcohol bottles from family members?
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12. After a social gathering, have you ever felt embarrassed because you drank too much?
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13. Have you ever been concerned that drinking might be harmful to your health?
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14. Do you like to end an evening with a nightcap?
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15. Did you find your drinking increased after someone close to you died?
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16. In general, would you prefer to have a few drinks at home rather than go out to social events?
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17. Are you drinking more now than in the past?
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18. Do you usually take a drink to relax or calm your nerves?
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19. Do you drink to take your mind off your problems?
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20. Have you ever increased your drinking after experiencing a loss in your life?
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21. Do you sometimes drive when you have had too much to drink?
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22. Has a doctor or nurse ever said they were worried or concerned about your drinking?
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23. Have you ever made rules to manage your drinking?
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24. When you feel lonely does having a drink help?
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© The Regents of the University of Michigan, 1991
FIGURE 12.1 Michigan Alcoholism Screening Test-Geriatric Version (MAST-G).
that there was adequate representation of the variety of older drinking behavior for maximum generalizability of the MAST-G. In addition to the MAST-G, the CAGE Questions and the MAST, all subjects in the validation phase were interviewed using the Substance Abuse Module of the Diagnostic Interview Schedule (DIS) to allow us to make alcohol dependence diagnoses. The diagnosis of alcohol dependence (DSM-III-R) was used as the validation standard. This process yielded a final MAST-G version of 24 items. The MAST-G has a sensitivity of 94.9%, specificity of 77.8%, positive predictive value of 89.4%, and negative predictive value of 88.6%. Similar values were found after excluding those subjects who
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did not currently drink. Therefore, when considering only those who had an opportunity to meet criteria for a current diagnosis, the psychometric properties were stable. High internal consistency as measured by Cronbach’s coefficient alpha (0.92) for the total MASTG was shown. Item-total correlations ranged from 0.30 to 0.69. Only four items had item-total correlations below 0.40. In addition, factor analysis identified five underlying symptom domains: Loss and Loneliness; Relaxation; Dependence; Loss of Control with Drinking; and Rule-Making. These five factors have reliability coefficients of 0.89, 0.83, 0.81, 0.64, and 0.77, respectively. Most of the inconsistency within the fourth factor is due to the men (0.60). The Short Michigan Alcoholism Screening Test-Geriatric version (SMAST-G) (see Figure 12.2) is the short form of the MAST-G and was developed for use in busy clinical settings and in research settings where brevity is an issue (Blow, Gillespie, Barry, Mudd, & Hill, 1998). Major barriers to using the longer scale in busy clinical settings are length and administration time. To address these issues, a short version of the MAST-G was developed. The 10 items on the short version of the MAST-G (SMAST-G) were selected by factor analysis. The initial sensitivity and specificity of the SMAST-G were tested in a sample of 50 older adult subjects (age range 55e81). The testing criteria were DSM-III-R diagnoses of alcohol abuse and/or dependence as measured by the Diagnostic Interview Schedule-Revised. Twentysix percent of the sample were diagnosed with alcohol abuse and/or dependence. Based on an ROC analysis, an SMAST-G cutpoint between 3 and 4 yielded a sensitivity of 0.85 and specificity of 0.97. The SMAST-G fared as well as the AUDIT, and may be more acceptable to elderly individuals. In this sample, SMAST-G is also an acceptable alternative to the MAST-G for elderly-specific brief alcohol screening and is superior to other screening instruments developed in younger populations. A score of two or more (e.g., two “yes” responses) indicates probable alcohol problems. The SMAST-G questions ask about participants’ experiences within the last year. YES (1)
NO (0)
_____
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2. After a few drinks, have you sometimes not eaten or been able to skip a meal because you didn't feel hungry?
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3. Does having a few drinks help decrease your shakiness or tremors?
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4. Does alcohol sometimes make it hard for you to remember parts of the day or night?
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5. Do you usually take a drink to relax or calm your nerves?
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6. Do you drink to take your mind off your problems?
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7. Have you ever increased your drinking after experiencing a loss in your life?
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8. Has a doctor or nurse ever said they were worried or concerned about your drinking?
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1. When talking with others, do you ever underestimate how much you actually drink?
9. Have you ever made rules to manage your drinking? 10. When you feel lonely, does having a drink help?
TOTAL S-MAST-G SCORE (0−10) © The Regents of the University of Michigan, 1991.
FIGURE 12.2 Short Michigan Alcoholism Screening TesteGeriatric Version.
_____
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The CAGE (Mayfield, McLeod, & Hall, 1974) is the most widely used alcohol problem screening test in clinical practice. It contains four items regarding alcohol use: wanting to Cut down; feeling Annoyed that people criticized one’s drinking; feeling Guilty about others criticizing drinking; and having a drink upon waking in the morning to get rid of a hangoverdan Eye-opener. Two positive responses are considered a positive screen and indicate that further assessment is warranted. The sensitivity and specificity of the CAGE varies from 60 to 90% and from 40 to 90%, respectively (Ewing, 1984; Mayfield et al., 1974). CAGE alcohol items can be asked alone, but are sometimes embedded along with CAGE-like items about exercise, smoking, and weight (Fleming & Barry, 1991). For example, participants were asked consecutively if in the last year they felt guilty about their: smoking, lack of exercise, weight, or alcohol use. The instrument most widely promoted as the standard screening test for clinical practice is the CAGE (Bush, Shaw, Cleary, Delbanco, & Aronson, 1987; Ewing, 1984; King, 1986). Like most of the screening instruments reviewed, the sensitivity and specificity of the CAGE varies from 60 to 95% and 40 to 95%, respectively (Beresford, Blow, Singer, Hill, & Lucey, 1990; Bush et al., 1987). The variability of these reports may be related to: (1) different criterion; (2) assessment of lifetime use as compared to current use; (3) varying the cutoff score from 1 to 4 positive responses; and (4) differences in population samples. Major deficiencies of this test include its inability to assess current problems, levels of consumption, or binge drinking. It has also not been well validated with at-risk drinkers, women, older adults and non-Caucasian ethnic groups. Older adults may not screen positive on the CAGE while still having problems with alcohol use. Others may not have annoyed them about their drinking because family may not know and they may not have close contact with friends. In addition, very few older adults need a drink upon rising in the morning, an “eye-opener.” They may consume alcohol at a level they used when younger and not believe they need to cut down. On the other hand, older women have been more likely to say they feel guilty while using very little alcohol. Follow-up questions are always needed for positive screens on these questions to determine what prompted each positive response. The Alcohol Use Disorders Identification Test (AUDIT) (see Figure 12.3) is well validated in adults under 65 (Babor et al., 1989; Blow et al., 1998; Fleming & Barry, 1991; Fleming, Barry, & MacDonald, 1991; Schmidt, Barry, & Fleming, 1995) and has had initial validation in a study of older adults (Blow et al., 1998). The AUDIT is comprised of two sections: a 10-item scale (see Appendix) with alcohol-related information for the previous year only; and a “Clinical Screening Procedure” which includes a trauma history and a clinical examination. The questionnaire is introduced by a section explaining to the respondent that questions about alcohol use in the previous year only are included. The recommended cut-off score for the AUDIT has been 8, but Blow et al. (1998) found a Cronbach’s alpha reliability of 0.95, sensitivity of 0.83, and specificity of 0.91 in a sample of older adults with a cut-off score of 7. Most of the questions in AUDIT are phrased in terms of “how often” symptoms occur. If the clinician is using the AUDIT as part of an interview, it is useful to offer several examples of the response categories (for example, “Never,” “Several times a month,” “Daily”) to suggest how he might answer. When the patient has responded, it is useful to probe during the initial questions to be sure that the most accurate response has been selected (for example, “You say you drink several times a week. Is this just on weekends or do you drink more or less every day?”). If responses are ambiguous or evasive, continue asking for clarification and ask the patient to choose the response closest to their experience. If the patient does not drink on a regular basis, recording the drinking pattern can be difficult. For example, if the patient was drinking heavily in the one month before an accident, but has not had any alcohol since, it will be difficult to characterize the “typical” drinking pattern. Using the amount of drinking and related symptoms for the heaviest drinking period of the past year will provide the most useful information. However, clinicians need to make a note of the special circumstances and time period assessed for that particular patient.
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Medications The “brown bag approach” is often recommended to determine medication use. The practitioner can ask older adults to bring every medication they take in a brown paper bag, including over-the-counter and prescription medications, vitamins, and herbs. Home health care providers can check medications and other remedies used by an older adult in the course of a regular home visit. Unfortunately, no screening measures have been developed and validated for assessment of prescription drug misuse and abuse in the elderly. There are some signs and symptoms, however, to consider (see Table 12.1; Blow, CSAT, 1998). The following questions are about the past year. (Score) 1. How often do you have a drink containing alcohol? Never (0) Monthly or less (1) 2 to 4 times a month (2) 2 to 3 times a week (3) 4 or more times a week (4) ___________________________________________________________________________________________ 2. How many drinks containing alcohol do you have on a typical day when you are drinking? None (0) 1 or 2 (1) 3 or 4 (2) 5 or 6 (3) (4) 7 or 9 10 or more (5) ___________________________________________________________________________________________ 3. How often do you have six or more drinks on one occasion? Never (0) Less than monthly (1) Monthly (2) Weekly (3) Daily or almost daily (4) __________________________________________________________________________________________ 4. How often during the last year have you found that you were unable to stop drinking once you had started? (0) Never (1) Less than monthly (2) Monthly (3) Weekly (4) Daily or almost daily ____________________________________________________________________________________________ 5. How often during the last year have you failed to do what was normally expected from you because of drinking? (0) Never (1) Less than monthly (2) Monthly (3) Weekly (4) Daily or almost daily ___________________________________________________________________________________________ 6. How often during the last year have you needed a first drink in the morning to get yourself going after a heavy drinking session? (0) Never (1) Less than monthly (2) Monthly (3) Weekly (4) Daily or almost daily ____________________________________________________________________________
7. How often during the last year have you had a feeling of guilt or remorse after drinking? Never (0) Less than monthly (1) Monthly (2) Weekly (3) Daily or almost daily (4)
FIGURE 12.3 Alcohol Use Disorders Identification Test (Audit).
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CHAPTER 12 Screening, Assessing and Intervening 8. How often during the last year have you been unable to remember what happened the night before because you had been drinking? Never (0) Less than monthly (1) Monthly (2) Weekly (3) Daily or almost daily (4) ____________________________________________________________________________________________ 9. Have you or someone else been injured as the result of your drinking? Never (0) Less than monthly (1) Monthly (2) Weekly (3) Daily or almost daily (4) ____________________________________________________________________________________________ 10. Has a relative, friend, or a doctor or other health worker been concerned about your drinking or suggested you cut down? Never (0) Less than monthly (1) Monthly (2) Weekly (3) Daily or almost daily (4) ____________________________________________________________________________________________
FIGURE 12.3dContinued
Additionally, there are special considerations when evaluating medication use in the elderly. Aging may affect the body’s ability to develop tolerance (Patterson & Jeste, 1999). Accordingly, older adults could experience more severe drug-related problems without changing their patterns of substance use or exceeding recommended therapeutic dosages (Adams & Cox, 1995; Fingerhood, 2000). Specifically, benzodiazepine dependence may arise even in the absence of apparent abuse (Finfgeld-Connett, 2004). Coupled with potential increased tolerance, older adults may naturally become less active, rendering it difficult for clinicians to detect substance abuse-related declines in functioning or social involvement (Fingerhood, 2000). Substance abuse in the elderly may coincide with other mental disorders, including other substance-related disorders, which increases the likelihood of experiencing an adverse drug interaction. Solomon and colleagues (1993) found that 75% of substance-dependent older adults were also diagnosed with another mental disorder, compared to 36% of young adults (Solomon et al., 1993). Data from the National Epidemiologic Survey on Alcohol and Related Conditions (NESARC) indicated that non-medical prescription drug use disorders were highly comorbid with anxiety, mood, and personality disorders, as well as other substance use disorders (Huang et al., 2006). Patients, caregivers, and clinicians could mistakenly characterize adverse effects of a medication, such as confusion or discoordination, as symptoms of a new illness or age-related decline (Dowling, Weiss, & Condon, 2008). Careful screening for alcohol, medications, and other drugs is a key to providing needed interventions and treatments to the vulnerable and growing population of older adults who are experiencing problems related to substances.
BROAD-BASED ASSESSMENT OF ALCOHOL PROBLEMS IN OLDER ADULTS Assessment helps the clinician to determine the severity of the alcohol problemdwhether or not the patient is an at-risk drinker, a problem drinker, or alcohol dependent. The following are some general guidelines for clinicians to adapt to each particular patient and situation. Clinicians can follow up the
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brief questions about consumption and consequences such as those in the AUDIT and the CAGE with a few more in-depth questions about consequences, health risks, and social/family issues. To assess dependence, ask questions about alcohol-related problems, a history of failed attempts to stop or cut back, or withdrawal symptoms such as tremors. Clinicians should refer any patient thought to be alcohol dependent for a diagnostic evaluation and possible specialized alcohol treatment with an emphasis on treatment targeted at older adults. Medication assessments include questions about prescriptions, particularly antidepressants, benzodiazepines, codeine, over-the-counter medications, and herbal remedies. If there is evidence of prescription drug problems, the patient should also be referred to a specialist for a diagnostic assessment and possible specialized treatment. For older adults with positive alcohol screens, assessments are needed to confirm the problem, to characterize the dimensions of the problem, and to develop individualized treatment plans. For purposes of insurance or other funding resources, the assessment should follow criteria in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) (American Psychiatric Association, 1994) or other relevant criteria, keeping in mind that these criteria may not apply directly to planning older adults’ treatment. The unqualified application of such criteria is problematic in older adult populations because the symptoms of other medical diseases and psychiatric disorders overlap to a considerable extent with substance-related disorders.
Problems with DSM-IV Criteria for Older Adults Most clinicians use the model defined in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV; American Psychiatric Association, 1994) for classifying the signs and symptoms of alcohol-related problems. The DSM-IV uses specific criteria to distinguish between those drinkers who abuse alcohol and those who are dependent on alcohol. Although widely used, the DSM-IV criteria may not apply to many older adults who experience neither the legal, social nor psychological consequences specified. For example, “a failure to fulfill major role obligations at work, school, or home” is less applicable to a retired person with minimal familial responsibilities. Nor does the criterion “continued use of the substance(s) despite persistent or recurrent problems” always apply. Many older alcoholics do not realize that their persistent or recurrent problems are in fact related to their drinking, a view likely to be reinforced by health care clinicians who may attribute these problems, in whole or in part, to the aging process or age-related comorbidities. Even though tolerance is one of the DSM-IV criteria for a diagnosis of substance dependence, the thresholds of consumption often considered by clinicians as indicative of tolerance may be set too high for older adults because of their altered sensitivity to and body distribution of alcohol (Atkinson, 1990). The lack of tolerance to alcohol does not necessarily mean that an older adult does not have a drinking problem or is not experiencing serious negative effects as a result of their drinking. Furthermore, many late onset alcoholics have not developed physiological dependence, and they do not exhibit signs of withdrawal. Table 12.2 presents the DSM-IV criteria for substance dependence as they apply to older adults with alcohol problems (Center for Substance Abuse Treatment, 1998). The drinking practices of many older adults who do not meet the diagnostic criteria for abuse or dependence still place them at risk of complicating an existing medical or psychiatric disorder. Consuming one or two drinks per day, for example, may lead to increased cognitive impairment in patients who already have Alzheimer’s disease, may lead to worsening of sleep problems in patients with sleep apnea, or may interact with medications rendering them less effective or causing adverse side effects. A barrier to good clinical management in these cases may be the lack of understanding of the risks of so-called “moderate drinking.” Limiting access to treatment because symptoms do not meet the rigorous diagnostic criteria of the DSM-IV may preclude an older patient from making significant improvements in their life.
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Table 12.2 Applying DSM-IV Criteria to Older Adults Criteria
Special Considerations for Older Adults
1. Tolerance
May have problems with even low intake due to increased sensitivity to alcohol and higher blood alcohol levels Many late onset alcoholics do not develop physiological dependence Increased cognitive impairment can interfere with self-monitoring; drinking can exacerbate cognitive impairment and monitoring Same issues across lifespan
2. Withdrawal 3. Taking larger amounts or over a longer period than was intended 4. Unsuccessful efforts to cut down or control use 5. Spending much time to obtain and use alcohol and to recover from effects 6. Giving up activities due to use 7. Continuing use despite physical or psychological problem caused by use
Negative effects can occur with relatively low use May have fewer activities, making detection of problems more difficult May not know or understand that problems are related to use, even after medical advice
(From Blow, CSAT Treatment Improvement Protocol, 1998)
The changing social roles and circumstances of older adults may further reduce the applicability of the criteria. Problems with occupational activities or work obligations may no longer be relevant in terms of functioning; however, an emphasis on maintaining a dwelling, managing finances, or participating in social or recreational activities is still salient. “Recurrent substance use in situations in which it is physically hazardous,” a substance abuse criteria in the DSM-IV (American Psychiatric Association, 1994), does not always mean driving while intoxicated, but can include other activities that may be dangerous for an older frail adult (e.g., climbing a ladder, crossing a street, or taking a bath while impaired by alcohol). Assessment can take place in one visit, if time permits, or in stages if the patient is not in immediate danger from their behavior.
Case Study 5 John Anderson is a 68-year-old man with a regularly scheduled appointment at the primary care clinic to monitor his blood pressure. He completed the screening questionnaire while seated in the waiting room. He had four glasses of wine the previous evening and had a history of binge drinking (generally four to five drinks per occasion) two to three times/week. An assessment of his drinking would follow DSM-IV criteria. After assessing DSM-IV domains the physician assistant said, “Mr Anderson, in the screening questionnaire you said you were drinking four drinks/day three times a week. You also reported experiencing some issues related to your drinking such as other people criticizing your drinking. As you age you become more sensitive to the effects of alcohol. The organs that clear alcohol through the body do not work as efficiently. You can have some negative consequences of drinking with lower levels of use than when you were younger. You mentioned that you had experienced such things as problems with your health including high blood pressure. You have also been unable to follow through on some of your obligations at the senior center. These problems can occur with even lower levels of alcohol use than you could manage when you were younger. Sometimes people also drink to help cope with changes in life. For now, I recommend that you should drink no more than one drink per day, no more than three times a week. Also, drinking more than three drinks on any occasion is considered binge drinking for men over 60. Binge drinking can cause negative consequences such as medication interactions, and can lead to problems controlling high blood pressure. Maintaining independence and staying as healthy as possible are important goals for a good quality of life and we want you to stay as healthy as possible. Are you willing to try cutting back on your drinking to the level I am recommending? Let’s see how this goes for a month and we can re-evaluate your alcohol use again at your next appointment.”
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Substance Abuse Assessment Instruments The use of validated substance abuse assessment instruments can be of great help to clinicians by providing a structured approach to the assessment process, as well as a checklist of items that should be evaluated with each patient receiving an alcohol assessment. Specialized assessments are generally conducted by treatment program personnel or trained mental and physical health care providers. Structured assessment interviews “possess (at least potentially) the desired qualities of quantifiability, reliability, validity, standardization, and recordability” (Institute of Medicine, 1990). Two structured assessment instruments are recommended for use with older adults (Center for Substance Abuse Treatment, 1998): the Structured Clinical Interview for DSM-III-R (SCID; Spitzer & Williams, 1985), and the Diagnostic Interview Schedule (DIS) for DSM-IV. This instrument was originally developed by Robins, Helzer, Croughan, & Ratcliff, (1981), with DSM-III criteria and has been updated as DSM criteria have evolved. The SCID is a multimodule assessment that covers disorders of: substance use; psychotic; mood; anxiety; somatoform; eating; adjustment; and personality. It takes a trained clinician approximately 30 minutes to administer the 35 SCID questions that probe for alcohol abuse or dependence. The DIS is a highly structured interview that does not require clinical judgment and can be used by non-clinicians. The DIS assesses both current and past symptoms and is available in a computerized version. It has been translated into a number of languages including Spanish and Chinese.
SCREENING AND ASSESSMENT FOR PHYSICAL, MENTAL, AND FUNCTIONAL HEALTH Many older adults require a full assessment of their physical, mental, and functional health to be able to adequately understand the impact of their alcohol use. Older adults with medical and psychiatric disorders are more likely to have impairments in functional abilities. Ninety percent of adults over the age of 65 require the use of glasses and 50% of adults over 65 have some degree of hearing loss (Hull, 1989; Plomp, 1978). Sensory impairments affect older adults in subtle ways that are not always immediately obvious but should be incorporated into any treatment planning. Older adults need to be able to read prescriptions or hear what is said in a group therapy session. When clinicians do not help their older patients compensate for sensory impairments, they can interfere with interventions and treatments. As an example, an evening program should not be recommended to older adults who cannot drive at night and do not have someone else to drive them.
Assessing Functional Health Functional health refers to a person’s capacity to perform two types of everyday tasks: activities of daily living (ADLs), which include ambulating, bathing, dressing, feeding, and using the toilet; and instrumental activities of daily living (IADLs), which include managing finances, preparing meals, shopping, taking medications, and using the phone. Limitations in these domains can result in an inadequate diet, mismanagement of medications or finances, or other serious problems. Activities of daily living (ADLs) and instrumental activities of daily living (IADLs) can be impaired due to alcohol use. Although alcohol-related functional impairments are potentially reversible, they should be considered when planning treatments. There are known complications of and differences between alcohol use in men and women related to compromised functional abilities and ADLs. In a recent study of older adults with a former history of alcohol abuse, impairment in ADLs was twice as common in women as in men (Ensrud et al., 1994). In addition, alcohol use was
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more strongly correlated with functional impairment than were smoking, age, use of anxiolytics, stroke, or diminished grip strength. The Medical Outcomes Study 36-Item Short Form Health Survey (SF-36) is a recommended selfreport questionnaire that measures health-related quality of life, including both ADLs and IADLs (McHorney, War, Lu, & Sherbourne, 1994). Although this instrument is more comprehensive, it is also more difficult to use because of complex scoring of the various subscales. The SF-36 does provide, however, a comprehensive assessment of health and not just functional abilities. This instrument can be used by health care providers in a range of settings. There is now a shorter validated version of this instrument available, the SF-12 (see Appendix).
Assessing Comorbid Disorders There is a complex relationship between alcohol use and coexisting physical or mental disorders. Medical and psychiatric problems can coexist with alcohol use with no specific relationship to drinking. On the other hand, those problems may be precursors or maintaining factors for drinking. The use of alcohol to anesthetize pain is an example of a factor that maintains a problem. In this instance, alcohol can be a problem by itself and can also interact with medications used for pain. The assessment of comorbid medical and/or psychiatric disorders can require the cooperation of a treatment team consisting of providers who treat primarily physical health problems and those who work with mental health problems. Treatment teams may be part of routine care in some clinical settings, but they may also need to be brought together on an ad hoc basis for particular cases. Studies have shown that the most common health problem among alcohol-dependent older adults is alcoholic liver disease. Chronic obstructive pulmonary disease, peptic ulcer disease, and psoriasis also are found much more frequently in older alcoholics than in older adults with no alcohol problems. Alcohol also appears to be a risk factor for myopathy, cerebrovascular disease, gastritis, diarrhea, pancreatitis, cardiomyopathy, sleep disorders, HIV/AIDS-related diseases, and both intentional and unintentional injuries (Tobias, Lippmann, & Pary, 1989). Of importance for clinicians who work with older adults is the finding that acute alcohol withdrawal syndrome is more protracted and severe in older adults than in younger adults (Brower, Mudd, Blow, Young, & Hill, 1994; Liskow, Rinck, Campbell, & DeSouza, 1989). Because there is no research on the recent practice of outpatient detoxification for older adults, very careful assessment is warranted before detoxification from any drug; outpatient detoxification may not be appropriate for older adults who are frail or who have a comorbidity.
Assessing Psychiatric Comorbidity Data from the Epidemiologic Catchment Area (ECA) study have strengthened support for a possible link between alcohol use and abuse and the development of other psychiatric illnesses (Regier et al., 1990). Adults with a lifetime diagnosis of alcohol abuse or dependence had nearly three times the risk of being diagnosed with another mental disorder. Comorbid disorders associated with alcohol use include anxiety disorders, affective illness, cognitive impairment, schizophrenia, and antisocial personality disorder (Blazer & Williams, 1980; Blow, Cook, Booth, Falcon, & Friedman, 1992b; Finlayson, Hurt, Davis, & Morse, 1988; National Institute of Alcholism and Alcohol Abuse, 1995a,b; Saunders et al., 1991; Wagman, Allen, & Upright, 1977). According to one study, older alcohol abusers are more likely to have triple diagnoses (alcohol, depression, and personality disorders) whereas younger substance abusers are more likely to have diagnoses of schizophrenia (Speer & Bates, 1992). Psychiatric comorbidities should be assessed by trained mental health providers and/or using instruments such as the SCID or the DIS (see section on alcohol assessment instruments).
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Assessing Depression Affective disorders, particularly depression and anxiety, are quite common in older patients and will influence intervention and treatment options. For instance, patients who take psychotropic medications need to be treated by staff familiar with these medications. Suicidal patients require intensive inpatient programs and an immediate intervention. Major depressive symptoms are common after detoxification and are often worse in older adults. These patients may need prescribed medicines to alleviate the depression before the abuse or addiction therapy is resumed. Instruments used to screen and assess depression can be extremely useful as methods of detecting significant affective illness and for monitoring changes in affective states. The Geriatric Depression Scale (GDS) Short Form (Sheikh & Yesavage, 1986) and the Center for Epidemiological Studies Depression Scale (CES-D; Radloff, 1977) have been validated in older age groups although not specifically in older adults with addiction problems. The CES-D may be most useful in general outpatient settings as a screen for depression among older patients. DSM-IV criteria is used as part of the assessment of depression.
Assessing Cognitive Impairments The presence of cognitive impairment or dementia significantly alters treatment decisions. It is particularly important to distinguish between dementia and delirium, which are often mistaken for each other by clinicians diagnosing older patients. Dementia is a chronic, progressive, and generally irreversible cognitive impairment sufficient to interfere with an individual’s daily living. Dementia will also limit an individual’s ability to interact in traditional group settings. Common causes of dementia include Alzheimer’s disease, vascular disorders (e.g., multi-infarct dementia), and alcohol-related dementia. Dementia also makes it more difficult to monitor outcomes of drinking (patients may forget they drank), to get into treatment, and to benefit from the treatment. Delirium is a potentially lifethreatening illness that requires acute interventiondusually hospitalization. The cognitive losses experienced with delirium, unlike the effects of dementia, can often be reversed with proper medical treatment. Patients who appear to have memory loss, impaired abstract thinking, confusion, difficulty communicating, extreme emotional reactions and outbursts, and disorientation to time, place, and person need to be evaluated for signs of cognitive impairment, since these symptoms are not part of the normal aging process. Two instruments are recommended to assess cognitive impairment, the Orientation/Memory/ Concentration Test (Katzman et al., 1983), which is simple and can be completed in the office, and the Folstein Mini-Mental Status Exam (MMSE; Folstein, Folstein, & McHugh, 1975), which is an acceptable alternative. The MMSE can be insensitive to subtle cognitive impairments in the assessment of older problem drinkers who have been sober for 30e60 days in an outpatient setting. Because the MMSE is weaker on visual-spatial testing and does not include screening tests of abstract thinking and visual memory, using the “draw-a-clock task” (Watson, Arfken, & Birge, 1993) and the Neurobehavioral Cognitive Status Examination (NCSE; Kiernan, Mueller, Langston, & Van, 1987) as supplements is recommended by the CSAT Treatment Improvement Protocol (1998) for drinking in older adulthood.
Treatment Options After determining that an older adult may benefit from a reduction in or complete abstention from alcohol use, the clinician should assess the patient’s understanding of the situation. Many older adults may not know that their alcohol use is affecting their health. Because patient understanding and cooperation are essential both in eliciting accurate information and following through on the treatment plan prescribed,
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clinicians should use the assessment process as an opportunity to educate the older adult and to motivate him or her to accept treatment.
CULTURAL ISSUES IN SCREENING AND ASSESSMENT Any screening, assessment, and intervention strategies for older adults with alcohol-related problems need to be sensitive to age, gender, and cultural issues. Studies on the use of screening questions for health promotion in primary care settings have found that, although providers agree with recommendations for screening, they are less likely to perform the screening, especially with elderly patients (Black, Sefcik, & Kapoor, 1990; Radecki & Cowell, 1990). Additionally, in cultures where the traditional role of the older individual is as an authority figure, health care providers from that culture have more favorable attitudes toward elderly patients. In an alcohol treatment population, Booth, Blow, Cook, Bunn, and Fortney (1992) found that members of some minorities and elderly, particularly Hispanic and African Americans, were more likely to seek inpatient care for diagnoses other than alcoholism and that, as a result, such individuals need targeted interventions to encourage them to seek alcohol-specific care. All treatment strategies need to be culturally competent and, to the extent possible, incorporate appropriate ethnic considerations (e.g., rituals). Health care providers may need the help of experienced non-medical personnel to adequately assess cultural issues in determining the best methods to screen older individuals for alcohol problems, and the best intervention and treatment options for those who screen positive. An awareness of specific cultural issues related to working with older adults about alcohol or medication problems will ensure continuity of care and provide the best opportunity to achieve positive outcomes.
SUMMARY Recent research indicates that at-risk drinking and alcohol-related problems are common in older adults. Clinicians can expect that approximately 15% of the men and 12% of the women in this age group will drink above recommended guidelines. Since most alcohol-related problems occur in nondependent drinkers (Institute of Medicine, 1990), mental and physical health care providers can have a substantial impact on a potentially serious problem through identification and treatment of these patients. Alcohol screening and assessment can be done quickly and efficiently in most health care settings. The key is the development of a system in each unique setting to insure that all older adults receive baseline screening and that patients who present with physical or mental health problems which could be alcohol-related receive differential assessments to determine if alcohol or alcohol/ medication interactions play a part in the presenting problem. With changes in the health care system to managed models of care, the time is right to move forward into systematic, cost-effective approaches to identifying treating one of the most vulnerable and fastest growing segments of the U.S. population.
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Oslin, D. W., Streim, J., Parmelee, P., Boyce, A., & Katz, I. (1997). Alcohol abuse: a source of reversible functional disability among residents of a VA nursing home. International Journal of Geriatric Psychiatry, 12(8), 825e832. Patterson, T. L., & Jeste, D. V. (1999). The potential impact of the baby-boom generation on substance abuse among elderly persons. Psychiatric Services, 50(9), 1184e1188. Plomp, R. (1978). Auditory handicap of hearing impairment and the limited benefit of hearing aids. The Journal of the Acoustical Society of America, 63, 533. Radecki, S. E., & Cowell, W. G. (1990). Health promotion for elderly patients. Family Medicine, 22(4), 299e302. Radloff, L. (1977). The CES-D scale: a self-report depression scale for research in the general population. Applied Psychological Measurement, 1(3), 385. Ray, W. A., Thapa, P. B., & Shorr, R. I. (1993). Medications and the older driver. Clinics in Geriatric Medicine, 9 (2), 413e438. Regier, D., Farmer, M., Rae, D., Locke, B., Keith, S., Judd, L., et al. (1990). Comorbidity of mental disorders with alcohol and other drug abuse. Results from the Epidemiologic Catchment Area (ECA) Study. Journal of the American Medical Association, 264(19), 2511. Robins, L., Helzer, J., Croughan, J., & Ratcliff, K. (1981). National Institute of Mental Health diagnostic interview schedule: its history, characteristics, and validity. Archives of General Psychiatry, 38(4), 381e389. Rosin, A., & Glatt, M. (1971). Alcohol excess in the elderly. Quarterly Journal of Studies on Alcohol, 32(1), 53. Saunders, P., Copeland, J., Dewey, M., Davidson, I., McWilliam, C., Sharma, V., et al. (1991). Heavy drinking as a risk factor for depression and dementia in elderly men. Findings from the Liverpool longitudinal community study. The British Journal of Psychiatry, 159(2), 213. Schmidt, A., Barry, K., & Fleming, M. (1995). Detection of problem drinkers: the alcohol use disorders identification test (AUDIT). Southern Medical Journal, 88(1), 52. Schonfeld, L., King-Kallimanis, B., Duchene, D., Etheridge, R., Herrera, J., Barry, K., et al. (2009). Screening and brief intervention for substance misuse among older adults: The Florida BRITE Project. American Journal of Public Health, 99(7), 1e7. Schonfeld, L., Rohrer, G., Zima, M., & Spiegel, T. (1994). Alcohol abuse and medication misuse in older adults as estimated by service providers. Journal of Gerontological Social Work, 21(1), 113e126. Sheikh, J., & Yesavage, J. (1986). Geriatric Depression Scale (GDS): recent findings and development of a shorter version. Clinical Gerontologist, 5(2), 165e173. Simoni-Wastila, L., & Strickler, G. (2004). Risk factors associated with problem use of prescription drugs. American Journal of Public Health, 94(2), 266e268. Simoni-Wastila, L., & Yang, H. (2006). Psychoactive drug abuse in older adults. American Journal of Geriatric Pharmacotherapy, 4(4), 380e394. Skinner, H., Holt, S., & Israel, Y. (1981). Early identification of alcohol abuse: 1. Critical issues and psychosocial indicators for a composite index. Canadian Medical Association Journal, 124(9), 1141. Solomon, K., Manepalli, J., Ireland, G. A., & Mahon, G. M. (1993). Alcoholism and prescription drug abuse in the elderly: St. Louis University grand rounds. Journal of the American Geriatrics Society, 41(1), 57e69. Speer, D., & Bates, K. (1992). Comorbid mental and substance disorders among older psychiatric patients. Journal of the American Geriatrics Society, 40(9), 886. Spitzer, R. L., & Williams, J. B. (1985). Structured Clinical Interview for DSM-III (SCID). New York, NY: Biometrics Research Division, New York State Psychiatric Institute. Tobias, C., Lippmann, S., & Pary, R. (1989). Dementia in the elderly. Postgraduate Medicine, 86(6), 97. Vestal, R., McGuire, E., Tobin, J., Andres, R., Norris, A., & Mezey, E. (1977). Aging and ethanol metabolism. Clinical Pharmacology and Therapeutics, 21(3), 343. Wagman, A., Allen, R., & Upright, D. (1977). Effects of alcohol consumption upon parameters of ultradian sleep rhythms in alcoholics. Advances in Experimental Medicine and Biology, 85, 601. Watson, Y., Arfken, C., & Birge, S. (1993). Clock completion: an objective screening test for dementia. Journal of the American Geriatrics Society, 41(11), 1235.
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Assessment and Conceptualization of Sexuality Among Older Adults
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Linda R. Mona1, Gali Goldwaser2, Maggie L. Syme3, Rebecca P. Cameron4, Colleen Clemency5, Aletha R. Miller6, Larry Lemos7, Michelle S. Ballan8 1
2
Long Beach Healthcare System, Long Beach, CA, USA, PTSD and Stress-related Disorders, Research Service (151), VA San Diego Healthcare System, San Diego, CA, USA, 3 VA Boston Healthcare System, Psychology Service, Boston, MA, USA, 4 Psychology, California State University, Sacramento, CA, USA, 5 Edith Nourse Rogers Memorial Veterans Hospital, Bedford, MA, 6 Deer Oaks Mental Health Associates-Behavioral Health Organization, Fort Worth, TX, USA, 7 Community Living Center, VA Long Beach Healthcare System, Long Beach, CA, USA, 8 Columbia University School of Social Work, New York, NY, USA
INTRODUCTION Mental health practitioners and researchers have recently begun to focus on the sexual experiences and physically intimate relationships of older adults as important topics for assessment, psychotherapy, and investigation. This recent change has been brought about by two main factors. Clinicians have been called to examine personal beliefs about diversity and multiculturalism and to more seriously consider age as an important aspect of diversity throughout an individual’s lifespan (Hays, 2001). There has also been an increase in ease around discussing sexuality over the past 10 years that has been brought forth by broadened public perceptions about an individual’s right to sexual pleasure, more flexible thinking about gender roles and identities, and increased attention to the intimate lives of sexual minorities (i.e., people with disabilities, transgendered individuals, and intersexed people) (Garnets & Peplau, 2006; Mona et al., 2009; Wierzalis, Barret, Pope, & Rankins, 2006). The reality is that many older adults enjoy satisfying and vibrant sexual lives. However, the unique psychological and physiological factors that affect intimate relationships and physical sexual expression change as individuals age. Furthermore, these changes can significantly influence level of sexual satisfaction and the meaning of sexual experiences. The literature suggests that a majority of older adults are engaged in intimate relationships and regard sexuality as an important part of life. Lindau and colleagues (2007) found that frequency of sexual activity reported by older adult respondents who were sexually active was similar to that reported among adults 18 to 59 years of age in the 1992 National Health and Social Life Survey (NHSLS) (Laumann, Gagnon, Michael & Michaels, 1994). Interestingly, frequency of sexual activity among older adults decreased only minimally with increasing age through age 74, despite a high rate of sexual problems (>50%) (Lindau et al., 2007). Thus, getting older and experiencing age-related physiological Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10013-2 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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and biological changes does not equate with a decrease in sexual activity. Instead, it appears that older adults are simply facing shifts in their experiences with sexual expression and their subjective evaluation of intimate relationships. This chapter will address the sexual lives of older adults from various psychological, physiological, and diversity perspectives. We begin this exploration by highlighting significant social, political, and medical advances that have shaped the pursuit of sexual satisfaction for older adults. Next we consider age as a diverse factor and further examine the ways in which other multicultural experiences affect the sexual experiences of older adults. A significant portion of the chapter is devoted to a review of the varying contexts in which sexual assessments might be completed with older adults, including suggestions for assessment measures and strategies that clinicians could utilize with this unique population. The intent of this section is to aid the reader in the development of broader case conceptualizations for sexual functioning and to provide guidance in choosing measures for use with older adults. We close the chapter with a case study highlighting a comprehensive approach to psychosexual assessment. Older adults are living fulfilling sexual lives and experiencing sexual expression differently due to age-related changes. Mental health professionals are therefore called to pay attention to this important life experience and to prioritize and conduct clinical sexual assessment in a comprehensive and ethically responsive manner.
OLDER ADULT SEXUALITY AND CURRENT TIMES Older adults of the early 21st century have experienced many extraordinary events and participated in the shaping and evolution of society throughout their lifespan. There have been key social and political events, major advances and changes in health care, and economic fluctuations and adversities that have required adaptation and resilience from this generation. This sociopolitical environment has in turn shaped older adults as a cohort, including their sexual beliefs and behaviors, as well as how society views older adult sexuality. The sexual lives of older adults have undoubtedly been affected by changes in the health care arena. Significant health care advances have led to improved physical health and increased longevity. According to recent statistics, average life expectancy in the United States is 78.1 years (U.S. Census Bureau, 2009). The growth of the long-term care industry has coincided with these changes, as older adults are living longer and many need some form of assistance in their older age. A congressional report given by the U.S. Health and Human Services and U.S. Department of Labor (2003) reported that an estimated 15 million Americans received long-term care services in 2000, both in community and institutional settings. Further, it was reported that a projected 27 million Americans will need long-term care services by 2050. As increased numbers of older adults require care, challenges for families arise such as the shifting of roles when younger cohorts become involved in health care decision-making and caregiving. The way sexuality is expressed will likely need to be negotiated in situations where the older adult is not completely independent and may be bound by rules, beliefs, and attitudes of an institution or residence in which they receive care (Hajjar & Kamel, 2004). Furthermore, it is essential for providers to recognize and understand the degree to which gender-specific factors may influence sexual health and sexual expression of older adults.
WOMEN, AGING, AND FACTORS AFFECTING SEXUAL FUNCTIONING A recent global study of women aged 40e80 found that 43% had at least one problem with sexual functioning (Laumann et al., 2005). Several concerns are commonly reported, such as lack of interest in sexual activities, difficulty achieving orgasm, dyspareunia and other sexual pain disorders, partner’s
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health and sexual functioning (Addis et al., 2006; Kaiser, 2003; Laumann, Glasser, Neves, & Moreira, 2009), lack of partner (DeLamater & Sill, 2005; Meston, 1997), and psychological issues such as body image and sexual self-esteem (DeLamater & Sill, 2005; Nusbaum, Helton, & Ray, 2004). Several factors are involved in the manifestation of these issues for older adult women, including physiological, psychological, and social contributions.
Physiological Factors A primary influence on sexual functioning is the change in hormones that women experience after menopause. Post-menopausal effects on the endocrine system include an almost complete cessation of principal estrogen, which affects blood flow, atrophy of the vaginal wall, vaginal narrowing, and decreases in lubrication. The resultant impact on sexual activities may include fewer and weaker muscle contractions, decreasing the intensity or presence of orgasm, as well as increased vaginal dryness, which can cause painful intercourse. Also, lowered levels of testosterone have been implicated in decreased libido for older adult women (DeLamater & Sill, 2005; Kaiser, 2003; Walsh & Berman, 2004). Estrogen and testosterone medications, including oral and topical agents, as well as lubricating products, have been used as treatment options. Research has also found that women who maintained regular sexual activity prior to and up to menopause had less marked changes (Kaiser, 2003). Good health is associated with increased sexual activity, improved sexual functioning, and more liberal sexual attitudes in older adults (Johnson, 1996; Lindau et al., 2007). For older adult women, the physical health and sexual functioning of their partners also affects their own level of sexual activity and functioning (Nusbaum, Singh, & Pyles, 2004). The presence of chronic and other medical conditions such as degenerative and rheumatoid arthritis (DeLamater & Sill, 2005; Kaiser, 2003), diabetes, hyper/hypotension, myocardial infarction, stroke, kidney disease, cancer, and spinal cord injury (Cohen & Alfonso, 1997; DeLamater & Sill, 2005; Kaiser, 2003; Walsh & Berman, 2004) is often associated with decreased sexual activity and impaired sexual functioning. Additionally, many medications have sexual side effects, which have been reported more often in older adults than in the general population (Wade & Bowling, 1986 as cited in DeLamater & Sill, 2005), including antihypertensives, antiandrogens, steroids, antidepressants, and mood stabilizers. In addition to medication side effects, specific medical conditions are either specific to or differentially affect women, including hysterectomies and gynecological and breast cancers. Surgical and other medical treatments to either remove or treat part of the sexual anatomy have both a physical (e.g., post-surgical pain, lower estrogen levels inducing vaginal dryness and atrophy) as well as a psychological impact (body image, sexual self-esteem, depression) (Kagan, Holland, & Chalian, 2008; Kaiser, 2003; Meston, 1997).
Psychological Factors For a significant number of older adult women, medical treatment does not suffice due to psychosocial factors, implicating a need to look beyond the medical model of assessment and treatment (DeLamater & Sill, 2005; Walsh & Berman, 2004). For example, body image is inexorably linked to sexual interest, participation, and satisfaction in women. The natural changes in the body as a result of aging (e.g., graying of hair, facial and body wrinkles) may be viewed as unattractive and affect a woman’s desire and interest in sexual activity, depending in part on her beliefs about sex and aging and/or her previous level of self-esteem (Kingsberg, 2000). Conditions such as incontinence, or the loss of or alterations in sexual anatomy (e.g., mastectomy) can add to body image concerns and should be addressed when appropriate (Tannenbaum, Corcos, & Assailan, 2006). Attitudes and beliefs about sex are also imperative to address with older adult women. Many of today’s older adults were socialized to view sex as a reproductive act and masturbation and/or sex
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outside marriage as unacceptable. The research is beginning to document a shift in this perspective as older and younger women tend towards equally liberal sexual attitudes (Nussbaum et al., 2004). Currently, older adult women tend to report significantly less interest, participation, and satisfaction in activities, such as masturbation, oral sex, erotic reading and movies, and sexual daydreams, when compared to their male counterparts (Johnson, 1996). Understanding a client’s attitudes is critically important to treatment planning because interventions may involve prescribing behaviors that are outside her comfort zone.
Social Factors Another phenomenon affecting older adult women is the lack of intimate partners (DeLamater & Sill, 2005; Lindau et al., 2007; Meston, 1997). Across age groups of older adults, women are less likely to be partnered, and the gender disparity widens with increased age. A recent national study reported that only 38.4% of women over the age of 75 were partnered, compared to 72% of their male contemporaries (Lindau et al., 2007). Presence of a partner may be connected to sexual activity in that only 4% of older adult women who were unpartnered were sexually active, while 22% of their unpartnered male counterparts reported engaging in sexual activities (Lindau et al., 2007). When considering low rates of sexual engagement of unpartnered females, potential explanatory factors may include attitudes about sex without an identified marital partner, limited range of intimate activities in older adult women, sexual self-esteem and body image, grief and other mood disturbances due to loss of partner, and/or loss of physical functioning.
MEN, AGING, AND FACTORS AFFECTING SEXUAL FUNCTIONING Since the introduction of ViagraÒ in 1998, widespread attention has been placed on the “epidemic” of male sexual dysfunction. As a result, changes in the male sexual experience that had previously been viewed as normative have been increasingly pathologized (Pesce, Seidman, & Roose, 2002). In the past decade, the ViagraÒ boom has led to the identification of a worried-well population, as men aged 18e45 are the fastest growing consumers of pharmaceutical interventions for erectile dysfunction (ED; Marshall, 2006). Despite the increasing numbers of clients with concerns about sexual dysfunction and/ or decreased sexual desire, a recent study by Kontula and Haavio-Mannila (2009) indicated that almost two-thirds of men reported no frequent problems with erection, even at the age of 70. As a result, for the older male client presenting with concerns of sexual functioning, close attention in an assessment should be placed on physiological, psychological, and social factors related to their identified problem.
Physiological Factors As men age, a variety of changes occur that affect the male sexual response. Older men may experience reduced libido, frequency in morning erections, penile sensitivity, arousal, and ejaculation volume or force, as well as prolonged plateau phases and refractory periods (Pesce et al., 2002). Increased attention in the past decade has been placed on the role of testosterone in the older male sexual experience. In adulthood, testosterone is associated with the maintenance of sexual functioning, mood, libido, and anabolic effects on bone and muscle (Gooren, 2006). Andropause, or late onset hypogonadism (LOH), is the decline of testosterone with increasing age (Gooren, 2006; Morley et al., 2000). Medical research has noted considerable variability in the amount of testosterone lost over the course of one’s life and how this impacts functioning (Gooren, 2006; Morley et al., 2000). Healthy men experience a gradual decline of 30% in plasma testosterone levels between the ages of 25 and 75, and
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considerably larger declines in these levels have been observed in men with chronic illness (Gooren, 2006). As a result, it is imperative that men presenting with concerns of sexual dysfunction be assessed both medically and psychologically. In addition to normative or pathological declines in testosterone, health concerns in the older adult male are frequently a reason for sexual inactivity. In fact, one-third of older men report that illness has disturbed their sex life (Kontula & Haavio-Mannila, 2009). Chronic illnesses such as diabetes, hypertension, arthritis, and prostate disease, and the treatments associated with these illnesses have been shown to contribute to reduced sexual desire and/or ED (Kontula & Haavio-Mannila, 2009). In a study by DeLamater and Sill (2005), hypertension and enlarged prostate were negatively correlated with sexual desire. Anticoagulants and hypertensive medications were additionally related to low sexual desire, but medications for cardiovascular disease and elevated cholesterol were not significantly correlated with desire.
Psychological Factors Attitudes towards sexual activity and general mental health have frequently been found to be predictors of sexual desire and activity (DeLamater & Sill, 2005; Kontula & Haavio-Mannila, 2009; Pesce et al., 2002). In addition to age, Kontula and Haavio-Mannila (2009) found that the strongest predictors of sexual activity were high sexual self-esteem, good health, active (and positive) sexual history, frequent alcohol use, and finding sex important in a relationship. Men who believe that sexual activity is important to their overall quality of life are significantly more likely to disagree with the concept that sex is only for young people (DeLamater & Sill, 2005). The complex interaction of mental disorders, treatments for mental disorders, and ED has additionally been noted (Pesce et al., 2002). It does appear that depression and anti-depressant medications may lead to sexual dysfunction (reduced libido, ED, delayed orgasm, anorgasmia), and erectile problems may have serious emotional and psychological effects (Marshall, 2006; Pesce et al., 2002). It is estimated that approximately one-third of men experiencing ED meet criteria for a psychiatric diagnosis, most commonly affective disorders (Pesce et al., 2002). Additionally, men with sexual concerns frequently have subsyndromal depression and anxiety (Pesce et al., 2002). Likewise, up to 75% of depressed clients report decreased libido as a symptom of their mental health concerns. It is clear that both medical and psychiatric factors that may be contributing to ED must be appropriately assessed in order to best ensure the appropriate treatment is delivered.
Social Factors Similarly to their female counterparts, the presence of a regular sexual partner is the greatest predictor of frequency of sexual activity in older male adults (Kontula & Haavio-Mannila, 2009). Because men are more likely to have a partner than women, they often report more frequent sexual activity in adulthood, with one-fourth of men reporting weekly sexual activity at the age of 70 (Kontula & Haavio-Mannila, 2009). Interestingly, DeLamater and Sill (2005) found that in contrast to women, the presence of a partner is not associated with greater desire in older men. According to this study, men preserve their level of sexual desire as they age regardless of partner status. Kontula and Haavio-Mannila (2009) also examined the impact of length of relationship on sexual activity frequency and desire. In relationships lasting longer than 40 years, one-third of men report weekly sexual encounters whereas 14% reported that they had not had sex in the past year (Kontula & Haavio-Mannila, 2009). Thirty-five percent of men (compared to 20% of women) in relationships lasting over 40 years indicated a desire for more frequent sexual intercourse in their relationship. Additionally, in contrast to the popular view that longer relationships would be related to lower levels
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of desire as men get “bored” with their partners, only one-fourth of men in relationships lasting more than 40 years reported lower desire. These relationships were additionally regularly faced with difficulties in sexual functioning and increasing illness as partners aged (Kontula & Haavio-Mannila, 2009).
RECENT ADVANCES IN PHARMACOTHERAPY FOR SEXUAL DISORDERS Since the first edition of this book (Zeiss, Zeiss, & Davies, 1999), significant advances in our understanding of pharmacological treatment options for sexual dysfunction in older adults have been made. With the discovery and subsequent release of phosphodiesterase type 5 (PDE5) inhibitors, effective treatment options for some sexual disorders, mainly male ED, have become increasingly available in the United States and Europe. Since the initial release of sildenafil citrate (ViagraÒ) in 1998, two more effective PDE5 inhibitors (i.e., LevitraÒ and CialisÒ) have been released and are all considered to be well tolerated and effective (i.e., decreasing symptoms of erectile dysfunction) treatments for ED. This class of medications has recently been considered for treatment of other sexual disorders, including women’s sexual disorders such as female sexual arousal disorder (FSAD), which is characterized by difficulty in obtaining sufficient vaginal lubrication and/or genital swelling, or maintenance of these sexual responses for completion of sexual activity, leading to significant psychosocial distress. A recent randomized crossover study comparing the efficacy of the three PDE5 inhibitors demonstrated overall equivalence among the three agents (ViagraÒ, LevitraÒ, and CialisÒ) (Jannini et al., 2009). Although only a small number of studies (e.g., Sipski, Rosen, Alexander, & Hamer, 2000) have been completed examining the effectiveness of PDE5 inhibitors for use with women, some support for the inclusion of these medications into treatment plans for women with sexual disorders has been demonstrated. Moderate levels of effectiveness, such as for treatment of FSAD (Schoen & Bachmann, 2009), have so far been found, including increases in subjective arousal (Sipski et al., 2000), frequency of arousal, fantasies, penile-vaginal intercourse and enjoyment, and overall improvement in sexual health (Caruso, Intelisano, Lupo, & Agnello, 2001). More recent follow-up studies have shown differing, less promising results (e.g., Caruso, Intelisano, Farina, Di Mari, & Angello, 2003). However, some studies also point to the role that PDE5 inhibitors have for women experiencing decreased libido because of the side effects associated with treatment for depression with SSRIs (Nurnberg et al., 2008). The evidence supporting unlicensed use of PDE5 inhibitors in women with sexual disorders remains inconclusive due to contradictory findings across studies (Foster, Mears, & Goldmeier, 2009). As a result, there is the need for further research on the use of PDE5 inhibitors to treat women with sexual dysfunction, particularly for postmenopausal women. Significant work in the area of hormone replacement therapy (HRT) has been completed during the past ten years, including some large randomized controlled trials (RCTs; Palacios, 2008). The risk/ benefit ratio for the use of HRT in men (Stanworth & Jones, 2008) and women (Palacios, 2008), continues to be examined, but most studies point to the sexual health benefits that are obtained from HRT for both men and women. Men’s testosterone levels peak somewhere in early adulthood and continue to decline throughout the lifespan, eventually leading to andropause in many men. Such biological changes (e.g., hypogonadism) are associated with decreased sexual desire and ED (Haren, Kim, Tariq, Wittert & Morley, 2006; Swerdloff & Wang, 2004). Older men may benefit from improved sexual health by seeking testosterone therapy alone, or in combination with a PDE5 inhibitor (Greco, Spera, & Aversa, 2006). Menopause and the hormonal changes associated with normal aging also impact women’s sexual health, as evidenced by vasomotor and vaginal sexual health-related symptoms
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including: vaginal dryness; narrowing of the vaginal wall; and delayed response to stimuli. Women can obtain sexual health benefits from treatment with HRT, although much more work needs to be done to elucidate which hormones and combinations of hormones best fit particular individuals to maximize the risk/benefit ratio. Although the research on the use of PDE5 inhibitors for women lags behind that for men, slowly more research is being conducted testing the efficacy and value of this class of medications for women. We will likely see continued success with these and newer medications in the near future. Additional studies will be needed to demonstrate the safety, tolerance, and efficacy of newer medications with an older adult population. Lastly, with the increasing availability of pharmacotherapy treatment options for sexual dysfunction in older adult men and women, providers working with this population will need to remain up-to-date so as to communicate the most current information possible to their clients. The complexities of the sexual lives of older adults have been detailed above and serve to illustrate the unique individual, social, and physiological similarities and differences that affect women and men as they age. What is of equal interest is the degree to which other diverse variables play a role in the intimate lives of older adults. That is, how do non-majority identities influence aging and, furthermore, how do multiple diverse factors interact to affect the erotic and romantic lives of older adults? The individual, family, and non-majority social experiences of older adults are reviewed below with particular attention paid to the ways in which clinicians may assess for multiple identities as they begin the process of case conceptualization.
DIVERSITY AND MULTICULTURAL CONSIDERATIONS IN OLDER ADULTS Given advances in health care interventions and increasing emphasis on disease prevention, the older adult population is rapidly growing and the proportion of ethnic minority older adults is growing at an even faster rate than that of European Americans (Dilworth-Anderson & Cohen, 2009). Although multicultural competence has received increased attention within mental health training programs and service delivery settings in recent years (Hays, 2008), not all forms of diversity are routinely acknowledged. Specifically, recognition of the cultural identities of sexual minorities and people with disabilities often lags behind awareness of ethnic or racial diversity, and our understanding of the interaction among multiple identities (e.g., older adult, bisexual, Asian American) is frequently rudimentary (Hays, 2008). Thus, health care providers must continue to develop their multicultural awareness and competence in order to effectively meet the needs of diverse older adults. Providing multiculturally sensitive sexual health care may prove particularly challenging due to providers’ potential for bias in light of deep-seated culturally based beliefs and attitudes about sexuality, particularly as it relates to diversity (Mulholland, 2007). Cultural factors significantly affect sexual health and well-being (Wincze, Bach, & Barlow, 2008). Clinicians must systematically consider the full range of cultural identities and contexts that may affect their clients, including race, ethnicity, immigration status, socioeconomic status, religion, gender and gender identity, sexual orientation, disability status, and age, as well as the interactions among multiple identity statuses, as each of these may affect the client’s experience of sexuality, sexual dysfunction, and options for ameliorating sexual problems. Cultural factors were not integrated into psychiatric diagnoses in general (Smart & Smart, 1997) nor assessment of sexual dysfunction in particular (see, for example, Sbrocco, Weisbery, & Barlow, 1995) until recently. In an effort to respond to criticism that the DSM-III and III-R (APA, 1980, 1987) failed to adequately address cultural factors in psychiatric diagnosis, the DSM-IV (APA, 1994) included more attention to cultural factors throughout several areas of the manual (e.g., discussion of cultural features of several disorders, modifications to Axis IV, etc.), and provided a list of culture-bound syndromes and an outline for cultural formulation.
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The cultural formulation outline, found in Appendix I of the DSM-IV-TR (APA, 2000), is organized around four broad domains, as well as an overall assessment summarizing the impact of culture on diagnosis and care. The first domain is cultural identity, which refers to the client’s ethnic and cultural reference groups and subgroups; extent of participation in the culture of origin and the larger culture; language proficiency and preference; and the role of culture in development (APA, 2000; Lewis-Ferna´ndez & Dı´az, 2002). Mona, Romesser-Scehnet, Cameron, and Cardenas (2006) discuss the case of Frank, a Salvadoran American man with cerebral palsy who struggled with various sexual issues. During his marriage, his wife, a Peruvian American, initially rejected penile-vaginal intercourse with him due to her concerns that cerebral palsy was heritable. Once she communicated her reason for avoiding sex, he was able to arrange for a physician to allay her concerns. They went on to develop a sexual relationship, but he never resolved his concerns about the impact of his disability on their sexual interactions, particularly given his perception that he did not live up to Latino cultural ideals of masculine sexuality. Frank’s marriage ended and he then received therapy that helped him to begin to integrate and positively reframe his identity as a person with a disability. Clients with disabilities who have been able to develop a positive disability identity and to connect with facets of disability culture ideals (e.g., acceptance of human differences, willingness to accept help and to assume interdependence, tolerance for uncertainty and imperfect outcomes, an appreciation of humor and the absurd, skills for managing systems) (Gill, 1995) bring significant strengths to the sexual problems that may develop in, or persist into, older age. Mona et al., (2009) presented the case of Annie, a Latina who experienced anxiety about sexual activity following a spinal cord injury. Over time, she developed an appreciation for the flexibility and intimacy possible in her new relationship because the focus of sexual activity was broader and more mutual than it had been in her previous relationships. Religious traditions provide one important context in which individuals experience their sexuality. Although some religious traditions emphasize the impurity of sex and/or the primary relationship of sexual behavior to procreation, it should not be assumed that a client who is deeply religious shares those views. For example, Bhui and colleagues (1994) discuss the cultural framework that accompanies Islamic and Hindu religious traditions, which they see as generally sex-positive in relation to sex within heterosexual marriage. Sexual pleasure within marriage is highly valued, although prohibitions against masturbation and extramarital sex are also present. Attention to the religious dimensions of cultural views about sexuality is critically important, accompanied as always by an idiographic perspective due to the heterogeneity of beliefs and teachings within broad religious traditions. The second domain has to do with cultural explanations of illness. This includes the way the client and their social group conceptualize the client’s symptoms, the ways in which symptoms and distress are communicated, and the relationship of the symptoms to cultural group norms, including an understanding of what the symptoms mean, how severe they are, and whether they fit a culture-specific syndrome pattern. In addition, culturally based etiological explanations need to be explored, as do the history of and orientation to various forms of treatment (professional and traditional). Bhui, Herriot, Dein, and Watson (1994) studied ethnically Asian clients along with a matched sample of ethnically English clients at a sex and marital therapy clinic in Britain. Both groups of clients were predominantly male, and most of the Asian clients in their sample were Indian, Pakistani, or Bangladeshi. Bhui and colleagues (1994) did not find demographic differences in education and occupational status or diagnostic differences between the ethnically Asian and British clients. However, Asian clients were more likely to describe their presenting complaint in somatic terms. One case highlighted by Bhui and colleagues (1994) illustrates a basic diagnostic challenge: even a culturally informed diagnosis can be inaccurate when assessment is not thorough! This client was
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referred by a urology clinic based on a psychological interpretation of his symptoms, which were consistent with a diagnosis of a culture-bound syndrome, dhat (which includes fatigue and anxiety about semen loss). However, it was discovered that his difficulties were associated with a fibrosis of the penis that caused a bend in its shaft when erect, leading to his re-referral to urology. Within the third domain, the client’s social support networks and their role in or relationship to the client’s distress and potential for recovery should be evaluated. Roles, expectations, and responsibilities among kin, religious, and other network members need to be understood in light of the client’s culture. Examining the culture of sexuality among lesbians, Garnets and Peplau (2006) review research that suggests lesbians masturbate more frequently, engage in erotic communication more readily, and experience orgasm more frequently than heterosexual women. However, they also discuss the controversy about findings that lesbian relationships may involve less frequent sexual behavior over time, and the difficulty in determining whether that is problematic or simply culturally normative. Research reviewed by Garnets and Peplau (2006) suggests that serial monogamy is characteristic of lesbian relationship patterns, and, interestingly, single lesbians appear to be more fully integrated into communities and friendship networks with other lesbians than partnered lesbians. Clinicians need to assess sexual behavior and social embeddedness in light of these and other possible cultural variations that accompany lesbian identity. The sociocultural context of sexuality for aging gay men as portrayed by Wierzalis et al. (2006) may typically include a desire to continue being sexual, with concomitant concerns about isolation due to the loss of youth, attractiveness, and virility, as well as possible unresolved grief over the loss of friends and lovers to the AIDS epidemic. However, these authors describe a positive developmental trajectory for many gay men who invest in and value the intimacy and connection available in relationships. They note the availability of gay subcultural contexts in which older men are valued, as either objects of sexual desire to younger men or as carriers of cultural wisdom. Important considerations when assessing gay men include attention to cohort effects, particularly the political context of their youth in relation to the gay civil rights movement, and for gay men, lesbians, and bisexuals, an awareness of the clients’ developmental history with respect to coming out (Wierzalis et al., 2006). Lastly, the fourth domain, cultural elements of the relationship between the individual and the clinician, should be considered. This may include relatively straightforward attention to ensuring the availability of interpreters, or the more difficult tasks of understanding the client’s experience of the health care interaction, the clinician’s awareness of her own culturally based attitudes and expectations, and the avoidance of a stereotype-based formulation of the client. Mulholland (2007) analyzed interview data from 25 White sex therapists who were members of the British Association of Sexual and Relationship Therapy. His findings suggest that White sexual health care providers run the risk of stereotyped thinking about non-White clients that may limit their understanding of the client. He noted a tendency to minimize ethnic differences in favor of viewing gender differences as universal. Additionally, he noted clinicians’ attitudes toward non-Western men and women. Specifically, providers expressed ambivalence between viewing women in other cultures as passive and oppressed, but also potentially sexually demanding and powerful. There was a tendency to view men from non-Western cultures as oppressive toward women, which was seen as accompanied by either tremendous responsibility to reproduce and to provide (among Asian men) or by promiscuity in the case of African and Caribbean men. Further, Mulholland (2007) found that therapists attributed generally good sexual satisfaction and health to heterosexuals of African descent, were more nonspecific in their characterization of sexual problems among White British individuals, and saw ethnically Asian men as more likely to suffer from premature ejaculation and masturbation anxieties, whereas ethnically Asian women were seen to experience low libido. Such generalizations may impede clinicians’ efforts to consider all possible diagnostic issues; in contrast, an awareness of the natural tendency to generalize and a willingness to go beyond one’s expectations can be invaluable. Clinicians
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need to monitor their own values and belief systems (Davies, Zeiss, Shea, & Tinklenberg, 1998) as well as their potential stereotypes as they undertake sexual assessment of clients of all cultures, but especially when the client/clinician encounter is cross-cultural (including age, ethnicity, etc.). Ensuring a culturally sensitive therapeutic relationship is challenging, as Lewis-Ferna´ndez and Dı´az (2002) discuss, emphasizing ethnic matching of client and provider can lead to the assumption that cultural differences are being acknowledged, when in fact the provider’s cultural framework may be very different from the client’s, despite language or ethnic similarities. Particularly challenging areas include judgment calls about the degree of pathology evidenced by particular symptoms, including, for example, non-traditional sexual practices; creating a therapeutic relationship that is consistent with the client’s cultural expectations; and choosing treatment modalities that fit the client’s understanding of what will be helpful (Lewis-Ferna´ndez & Dı´az, 2002). Finally, the cultural formulation advocates summarizing the overall cultural assessment as it relates to the client’s identity, symptoms or syndrome, social context, interaction with the system of treatment and care, and prognosis (APA, 2000). Attention to the cultural formulation as it relates to multiple facets of a client’s identity will assist clinicians in providing a thorough and thoughtful analysis of issues that might otherwise be overlooked. Practitioners faced with complex intersections of identity (e.g., configurations of generational, religious, and socioeconomic status) will need to educate themselves about the impact of these statuses on sexuality and sexual health care, while remaining vigilant about their own potential to substitute generalizations for an individualized understanding of the client’s experience.
INITIAL STAGES OF ASSESSMENT Before discussing specific assessment strategies for the older adult population, we would like to highlight treatment setting issues that often create a crucial context for services delivery. Considering the myriad of access points to this population and the diversity of roles and settings for providers including integrated primary care, enhanced-referral systems, and multi- and interdisciplinary team settings, it would be impossible to give universal advice regarding assessment of sexual functioning in older adults. Frequently mental health providers serve as consultants, referral sources, and/or members of a larger team, which may place them in the role of advocate and educator to other professionals and teams. Thus, when advocating for or implementing assessment services, it is important to keep in mind that the type of assessment and the role of the mental health provider will change as a function of the setting. Primary care is one of the most frequent points of access to health care for older adults. Assessing for healthy sexual functioning in this setting is often overlooked and frequently avoided in this population. Older adults rarely introduce the topic of sexual expression because of beliefs that their problems are a normal process of aging, lack of knowledge about available services/treatment, embarrassment, concerns about providers being disgusted and/or disinterested in their sexual functioning, and a perception that general practitioners hold negative attitudes toward older adult sexuality (Gott & Hinchcliff, 2003; Laumann et al., 2009). Further, physicians often report additional barriers including time constraints, fear of opening the “floodgate” or offending the older adult, lack of training in sexual functioning assessment, and embarrassment (Bartlik, Rosenfeld, & Beaton, 2005; Bonds et al., 2007; Gott, Hinchcliff, & Galena, 2004; Verhoeven et al., 2003). These and other factors contribute to low rates of identification of sexual problems in older adults presenting in primary care settings. Clinicians can play a significant role in advocating for screening questions and tools to use in an enhanced-referral primary care setting, as well as provide education on how to utilize a permissiongiving and trusting style, specifically to clinics, physicians, and/or teams that have a high volume of
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older adult referrals. In an enhanced-referral setting the physicians, pharmacists, mental health providers, and other team members are not located in the same physical space, but may be part of the same care team and may meet on a semi-regular basis. Changes can be as simple as adding one question aimed at identifying potential sexual functioning problems with a few follow-up questions to rule-in or rule-out medical treatment. Examples include: (1) “What questions or concerns might you have with your sexual functioning?”; (2) “Many of my clients have noticed changes in erections/ painful intercourse/sexual functioning. Are you noticing any changes in those areas?”; and (3) “Sexual health is an important part of overall health, and I ask all clients about their sexual functioning. May I ask you some questions about your sexual functioning?” (Hatzichristou, et al. 2004; Sadovsky, 2000). Mental health providers may also work as part of an interdisciplinary team. For example, they may deliver assessment services in a community setting such as a hospice, nursing home, or other assisted living facilities. Administrators and staff of such settings may have negative attitudes, beliefs, and policies regarding sexual relationships for residents, which create barriers to sexual expression (Drench & Losee, 1996; Hajjar & Kamel, 2004). Families’ embarrassment and problematic beliefs about older adult sexuality might also inadvertently hinder sexual expression (Rheaume & Mitty, 2008; Zeiss & Kasl-Godley, 2001). Mental health providers may need to assume the role of advocate for older adult clients, promoting the right to participate in sexual activities, or educating staff and family about older adult sexuality (Rheaume & Mitty, 2008; Zeiss & Kasl-Godley, 2001). Assessment of intimate relationships and sexuality can be easily incorporated into the facility’s intake interview under the psychosocial or social support sections. If the clinician is an active participant on the interdisciplinary team and routinely sees all clients, this can be integrated into their assessment process, as described above for primary care settings. As with an enhanced-referral primary care setting, mental health providers should educate staff as necessary about questions to ask, referral services available, and permission-giving and trusting styles of communication. Sexuality assessment in a long-term care facility has specific considerations and should include areas such as privacy of information and proposed activities, types of assistance needed for desired activities, and capacity evaluations focused on sexuality.
Assessment of Sexual Consent Capacity in Older Adults Rationale and Definitions Assessment in the older adult population often includes the evaluation of capacity, given the prevalence of dementing disorders (e.g., mild cognitive impairment, Alzheimer’s disease), neurocognitive threats such as stroke, and other neurodegenerative diseases in this population. According to a Global Burden of Disease report released by the World Health Organization in 2000, the occurrence of dementia in adults 65 years and older in the US is 6e10%, with Alzheimer’s disease accounting for 50e70% of these cases. Also, an integrative global analysis revealed that rates of dementia begin at approximately 1% for 60- to 69-year-olds and this rate doubles for every five-year increase in age (WHO, 2000). Capacity is a clinical term referring to a clinician’s assessment of an individual’s ability to make decisions and perform certain functions within a specific domain (e.g., driving, giving consent to participate in research, testifying). It is essential to understand that the clinician’s conclusion about capacity is not a legal finding, but often serves as evidence in a legal proceeding (American Bar Association/American Psychology Association, 2008). Sexual consent capacity is the ability to voluntarily make a reasoned decision whether or not to engage in sexual activity. There is limited research on this issue among older adults, and a related lack of uniform clinical and legal standards for use in this population. Many existing legal standards have emerged from criminal proceedings involving the developmentally disabled population; consequently,
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many sexual consent capacity assessment tools have been developed and normed on the developmentally disabled population. The literature on developmentally disabled individuals cannot be generalized to older adults; however, the two areas of research may be able to converge as more studies applying existing assessment standards to older adults emerge (Bogacki, Armstrong, & Stuempfle, 2004; Kennedy, 1999). The decision whether or not to engage in sexual activities differs from other domains of decisional capacity. One central difference is temporal, in that an older adult choosing whether or not to have a medical procedure or execute a financial decision may have time to weigh the risks and benefits and may consult with others, whereas in a sexual consent scenario the opportunity to consult others and take time to make decisions is often absent. Also, in sexual consent there is no conservator or guardian appointed that can serve as a deputy decision-maker for the individual with diminished capacity (American Bar Association/American Psychology Association, 2008; Kennedy, 1999, 2003; Kennedy & Niederbuhl, 2001). In the case that an individual has been appointed a guardian for other decisionmaking domains, the concept of limited guardianship serves to protect the individual’s autonomy. In fact, many state laws specifically address limiting the guardian in making social and sexual decisions unless the adult is found incapable. Thus, older adults may be considered to have capacity for sexual decision-making even if they have been determined to lack capacity for another area, such as financial decision-making.
Legal and Ethical Standards Awareness of the legal and ethical standards governing sexual consent capacity is critical when conducting assessments in this area. Constitutional, civil, and criminal law each has an effect on legal rulings in this area, and legal standards vary from state to state (Lyden, 2007; Stavis, 1991). Although there are no universally accepted criteria in the U.S., the majority of state laws regarding sexual consent capacity generally involve three widely accepted elements of capacity (Lyden, 2007). The first is knowledge of relevant facts needed to make the decision. Second is the rationality or mental capacity to realize and reason through the risks and benefits of engaging or not engaging in sexual activity. The third element is voluntariness, which indicates that the older adult can take self-protective measures against coercion when making the decision (American Bar Association/American Psychology Association, 2008; Lichtenberg & Strzepek, 1990; Lyden, 2007; Stavis, 1991). Even states that have not adopted these three elements often use a variation on them, such as requiring only rationality and voluntariness, or adding another requirement such as understanding the moral implications of sexual expression (e.g., Alabama, Colorado, Hawaii, Idaho, and New York). It is suggested that practitioners consult state guardianship laws regarding capacity, and specifically sexual consent capacity, in order to structure the assessment process in such as way as to satisfy legal standards. Consulting with a legal professional who is familiar with or works with guardianship, conservatorship, and competency cases may be helpful. Once the legal standards have been investigated, it is recommended that clinicians document the relationship of their assessment protocols to the legal elements of capacity set forth by the state. Clinicians must consider the ethical implications of their approach to sexual capacity assessment. Specifically, when making a clinical decision in sexual consent capacity the clinician is often balancing the ethical principles of: (1) autonomydPrinciple E: Respect for People’s Rights and Dignity; and (2) protecting the client from harmdPrinciple A: Beneficence and Nonmaleficence (APA, 2002; Lichtenberg & Strzepek, 1990). Consultation with other professionals, including through state associations and organizations serving older adults, may serve to ensure that ethical requirements related to the assessment process are fulfilled. Across settings, older adults are affected by the decisions of caregivers, guardians, staff, family, and friends, and may often lack the opportunity and/or ability to advocate for themselves. It is
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important to understand the organizational context in which the assessment is being undertaken in order to ensure a systemic approach to balancing the client’s needs and rights with those of the organization. Clinicians have an important opportunity to protect their older adult clients, as well as to give them a voice when it comes to sexual expression.
Assessment Standards and Considerations Currently, there is one known assessment tool specifically intended for measuring sexual consent capacity in older adults. Lichtenberg and Strzepek (1990) developed a structured interview aimed at establishing sexual consent capacity with dementia clients in a long-term care facility (Table 13.1). The authors designed the questions to assess: (1) basic cognitive functions (memory, recognition); (2) reasoning and planning skills; (3) affective stability; and (4) social judgment skills. Also, the assessment was structured as a two-part process: (1) asking the client the assessment questions and (2) relaying the client’s answers to the interdisciplinary team to gather any feedback and/or behavioral evidence that may be supportive or contradictory. Other attempts to standardize sexual consent capacity have been undertaken by researchers working with individuals with development disabilities (e.g., Kennedy, 1999). As mentioned, these populations are distinct in many ways and the generalizability of these assessment tools for older adults has not been established. Considerations for sexual consent capacity assessment include whether or not to involve staff, family, and/or interdisciplinary team resources in the assessment process (e.g., adult children, administrative staff, and/or nursing at a long-term care facility). These sources can provide important collateral information, as well as a comforting and familiar presence for the older adult. An emerging concept in the literature is the importance of assessing whether decisions the client makes are consistent with formerly articulated values; collateral information can be particularly helpful in determining the client’s longstanding value system. However, collateral sources may serve as a hindrance to the clinician’s evaluation and advocacy to the extent they hold negative attitudes toward older adult sexuality and experience discomfort about the possibility of sexual expression in long-term care facilities (Gott & Hinchcliff, 2003; Lyden, 2007; Roach, 2004; Walker & Harrington, 2002). Other assessment considerations include the use of tools (e.g., manikins, diagrams, videos) and adaptive techniques with older adults who may have difficulties reading, hearing, and/or who may not have full physical functioning. As with other capacity domains, the clinician should view the declaration of capacity or incapacity as a temporary decision and keep in mind the possibility of gaining capacity with further education and/or rehabilitation (American Bar Association/American Psychology Association, 2008; Kennedy, 1999). Table 13.1 Assessment Guidelines (Lichtenberg & Strzepek, 1990) 1. Patient’s Awareness of the Relationship a. Is the patient aware of who is initiating sexual contact? b. Does the patient believe that the other person is a spouse and thus acquiesce out of a delusional belief, or are they cognizant of the other’s identity and intent? c. Can the patient state what level of sexual intimacy they would be comfortable with? 2. Patient’s Ability to Avoid Exploitation a. Is the behavior consistent with formerly held values/beliefs? b. Does the patient have the capacity to say no to any uninvited sexual contact? 3. Patients Awareness of Potential Risks a. Does the patient realize that this relationship may be time limited (placement on unit temporary, one-time interest, etc.)? b. Can the patient describe how they will react when the relationship ends?
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Providers may additionally need to be sensitive to the importance of assessing sexual capacity when working with clients without dementia diagnoses. As outlined below, intimacy and sexuality are lifelong needs. For clients at end-of-life with limited physical functioning, providers may need to be sensitive to ethical and legal implications of promoting partner intimacy.
DEATH, DYING, AND SEXUALITY IN OLDER ADULTS The importance of addressing sexuality at end-of-life is not a new concept, but rather an often overlooked one (Wasow, 1977). It is a widespread assumption that individuals with chronic and/or terminal illnesses have reduced sexual needs, and/or that it would be “abnormal” to have sexual urges when dealing with a life-threatening illness (Mercer, 2008). Even more frequently ignored is sexuality in older adults at the end-of-life, as the limited research on this topic has predominately focused on sexuality and sexual functioning among middle-aged cancer patients. Qualitative studies conducted in the last ten years in hospice settings have included sexuality issues among older adults. In fact, in one study, an 81-year-old male with metastatic lung cancer discussed the importance of his sexual identity and ongoing sexual experiences only four days before his death (Lemieux, Kaiser, Pereira, & Meadows 2004). While the importance of discussing sexuality at end-of-life has begun to receive attention, there is still a paucity of research examining how intimacy is encouraged, facilitated, or assessed during this unique phase of life (Stausmire, 2004). The assessment of sexuality among individuals at end-of-life can be a difficult topic, and participants in qualitative studies encouraged providers to be sensitive to the timing of their assessment (Lemieux et al., 2004; Stausmire, 2004). In particular, for clients with a newly diagnosed terminal illness, they encouraged providers to wait until after the first round of treatments are over to begin exploring sexual functioning and desire (Lemieux et al., 2004). This sensitivity to timing allows for the client and/or their partners to deal with the immediate needs of treatment and identify potential side effects before re-evaluating and re-establishing intimacy. Illness and aggressive treatment regimens may lead to progressive loss of body function, which may affect energy level, body image, and selfesteem, and may result in the need for a caregiver to assist with activities of daily living (Stausmire, 2004). It is important to recognize that while the form of intimacy may change with an individual’s progressing weakness at end-of-life, the importance of oneself as a sexual being remains stable. If a partner is available, conducting a sexual assessment conjointly with the client and their partner can be especially helpful. For couples who have experienced a dramatic decrease in their sexual intimacy, it is important to explore the reasons behind this rather than assume it is related to decreased physical functioning. For example, a healthy partner may assume that the dying partner is too ill to engage in intimate sexual acts, or may be concerned about causing pain (Stausmire, 2004). In contrast, the dying partner may view the healthy partner’s unwillingness to initiate sexual contact to mean loss of attraction. Such breakdowns in communication may further distance the couple and lead to less frequent intimate contact. Allowing the assessment process to be a place where client and partner can explore the importance of their sexual relationship, how illness/injury has impacted the relationship and the ability to function sexually can promote positive communication and, subsequently, sexual connectivity (Stausmire, 2004).
ASSESSMENT TOOLS AND GUIDELINES Of primary importance in the assessment of sexual functioning and intimate relationships in older adults is the ability to build rapport and establish a comfortable, non-threatening environment to
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discuss this often very personal topic. Due to generational factors and individual beliefs about sexuality, older adults may be reluctant to initiate this conversation within a therapy session, and instead look to their providers to lead the discussion. Throughout this section we will identify and describe semi-structured interviews that promote the disclosure of comprehensive sexually related information, in addition to describing various psychometrically supported measures that may serve as a means of supplementing the clinical interview. O’Connor and colleagues (2008) discuss the relative merits of structured interviews versus self-report questionnaires for the assessment of sexual dysfunction in older adults. A comprehensive sexual assessment incorporates both of these methods of assessment thereby enhancing the client/clinician relationship and reducing misinformation acquired during the assessment. Interview data combined with detailed information about sexual behavior and relationship patterns allow respondents to take the needed time to independently formulate and/or expand upon answers to sensitive questions. To date, few measures have been validated on older adults. As a result, some of the measures discussed below are measures of sexual functioning, interest, and attitudes that may have useful application to the older adult community with appropriate modifications. Various practitioners and researchers have emphasized the importance of assessing both the clients and, if applicable, their partners in order to best ascertain the nature of the presenting concerns (Sbrocco, Weisberg, & Barlow, 1995; Zeiss, Zeiss, & Davies, 1999). According to Sbrocco and colleagues (1995), a large part of the clinical interview should consist of educating clients. In particular, they emphasize the importance of teaching positive communication skills around sexuality, as well as providing education about a realistic understanding of “normal” sexual functioning. For example, many older adults may feel uncomfortable disclosing their masturbation and self-stimulation practices, out of concern that these are abnormal or immoral. The interviewer may put the client at ease by normalizing these practices (after all, almost 99% of the population engages in masturbation practices (Sbrocco et al., 1995)) while eliciting information about the client’s history and/or beliefs around masturbation (Sbrocco et al., 1995). These authors encourage interviewers to frame questions in a manner that normalizes sexual activity while providing information and alleviating the client’s discomfort about discussing this topic. Sbrocco and colleagues (1995) additionally remind practitioners that it is not uncommon for these interviews to be conducted by providers who are 30e40 years younger than the client. Particularly in training settings, they suggest interviewers remain sensitive to this age discrepancy and normalize client discomfort as applicable (Sbrocco et al., 1995).
A Semi-Structured Interview for Thorough Assessment of Sexual Dysfunction Zeiss, Zeiss, and Davies (1999) outlined a model for the assessment of sexual functioning among older adults (see Table 13.2). This model provides a solid framework for an initial assessment by examining psychological, medical, social, and cognitive factors in sexual function and dysfunction through openended questions. Recent developments, including the increased focus on medical interventions for treatment of sexual dysfunction and an improved understanding among providers of sexuality as a significant component of quality of life, have made it timely to expand on the interview outlined above. Whereas Zeiss, Zeiss, and Davies (1999) specifically emphasize the importance of avoiding the assumption of heterosexuality and encouraging neutrality towards sexual activity that is often considered socially taboo (e.g., use of sex workers/prostitutes), increased focus should be placed on sensitivity to various diversity issues. For example, when assessing a person with a disability, inquiring specifically about if/how sexual positions are limited and whether the client incorporates assistive devices (e.g., sex toys and other adaptive products) into their sexual encounters may be warranted. Additionally, assessment must include the client’s past experiences with pharmacological interventions and openness to explore other options. For example, for an older adult male client who has had limited
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Table 13.2 A Semi-structured Interview for Thorough Assessment of Sexual Dysfunction (Zeiss, Zeiss, & Davies, 1999) 1. General Background a. Explanation of clinic procedures b. Request for explicit, specific information, while providing permission for patient to be uncomfortable c. Life situation i. Age ii. Relationshipdstatus, length, prior relationships, sexual orientation iii. Familydkids, living situation iv. Workdstatus, history d. Drug and alcohol status i. Current use of alcohol, cigarettes, other drugs ii. Prior use e. Medical situationdvery quick review i. Major medical problems ii. Menopausal status, if female patient, or menopausal status of female partner, if relevant 2. Nature of Sexual Difficulty a. Description of problem(s) and current functioning i. Desire problems 1. Sexual thoughts, fantasies, feelings, urges 2. What percentage of the time is this a problem? ii. Excitement phase problems 1. Erection problems a. What percentage of the time is this a problem? b. Percent erection obtained typically and maximally c. Frequency of attempts d. When do problems occurdduring which sexual activities? During foreplay? During intromission? Prior to ejaculation? With which partner(s)? e. Pain with erection, intromission, or ejaculation f. Nocturnal or A.M. erections? Nocturnal emissions? g. Erectile experience during masturbation 2. Lubrication/vasocongestion problems a. What percentage of the time is this a problem? b. Percent lubrication, labia engorgement obtained typically and maximally c. Frequency of attempts d. When do problems occurdduring which sexual activities? During foreplay? During intromission? Prior to ejaculation? With which partner(s)? e. Pain with intercourse f. Experience during masturbation iii. Orgasm phase problems a. Rapid ejaculation i. Frequency of sexual activity; any changes in frequency? ii. Duration of erection until ejaculation iii. Duration of intercourse/sexual activity iv. Behavior after ejaculation (patient’s and partner’s) v. Masturbation frequency and style vi. What influences latency until ejaculation b. Lack of orgasm i. Aroused during foreplay? Intercourse? Other sexual activity? ii. Percent of time orgasmic with partner and typical timing when orgasmic iii. Percent of time orgasmic in masturbation; typical timing when orgasmic iv. If uncertain regarding orgasm, ask if experience is pleasant: How would you describe your sensations during arousal? When are you having an orgasm? v. How relationship with partner affects the problem
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Table 13.2 A Semi-structured Interview for Thorough Assessment of Sexual Dysfunction (Zeiss, Zeiss, & Davies, 1999) Continued Note: Questions about any other sexual problems, such as vaginismus, dyspareunia, or sexual aversion, should follow the same pattern: describe current functioning in detail and examine what currently influences the occurrence of the problem a. History of the problem i. Baseline sexual functioning 1. When was the last period of sexual function with no major problems? 2. What was the pattern of activity at that timedfrequency, partner(s), type of sexual activities, etc.? ii. Pattern of onset 1. Gradual vs. abrupt 2. What aspects of the problem changed first (e.g., if erection, was percent of typical erection or percentage of time able to get erection first affected?) 3. Circumstances on first occasion(s) 4. If there are multiple problems, what was the sequence of onset, e.g., if erection or orgasm problems, did they precede or follow desire problems in onset? 5. If erection or orgasm problems could be resolved, what is patient’s expectation of likely desire level? iii. How does the couple handle the problem? iv. What have they tried to resolve the problem? v. Any upsetting experiences caused by the problem (intra-psychic or between the couple; e.g., is the identified patient distressed/depressed as a consequence of the sexual problem? b. Causal beliefs and goals (this section is vital; do not omit) i. Patient’s and partner’s beliefs about causes of the problem 1. Primary hypotheses 2. Other possible contributing factors 3. Openness to a multifactorial explanation ii. Goals 1. Do not assume the goal is the opposite of the problemdask what the patient’s goals are. How much change in quality of life does the patient expect if sexual problems are resolved? 2. How do the patient’s goals match the goals of his/her partner (if there is one)? iii. Current attitudes and beliefs 1. The purpose of this section is to find out a. Current sexual values and behaviors b. The degree of integration of segregation of sex from other aspects of the patient’s life c. What areas might be particularly difficult for him/her/them to change 2. Current attitudes toward sex a. General attitudes, concern re: “normalcy” b. Positive/negative/neutral feelings about: genital area, menstruation, vaginal/penile secretions, masturbation, oral-genital contact, foreplay, intercourse, manual stimulation to orgasm, sexual fantasy c. Beliefs about partner’s attitudes re: a and b above d. Beliefs about sex and aging e. Should men and women have different roles in sexual activities? Nonsexual activities? Patients’ views on sex-specific roles compared to his/her current situation f. Conflicts between attitudes about sex and those of peer groups, religion, partner(s) g. Place of sex in patient’s relationship: how important? iv. Current behavior (some of this is redundant. Pursue according to nature of problem and clarity of information already derived from other questions. Some repetition is useful to check reliability and to allow patients to share some information they may not have recalled earlier) 1. Relationship with primary partner, if relevant a. Feelings about the relationship: positives and negatives b. Physical and non-physical expression of affection in relationship (Continued)
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Table 13.2 A Semi-structured Interview for Thorough Assessment of Sexual Dysfunction (Zeiss, Zeiss, & Davies, 1999) Continued c. Partner’s health status d. Is divorce or separation a possibility? e. Impact of sexual problems on relationship f. Communication: Generally; about difficult or conflictual topics; specifically about sex g. Patterns of sexual initiation h. Other problem areas i. Use of contraception, if relevant j. If partner not present, will he/she come in? Discuss in details, emphasizing the importance of couples’ interview as next step 2. Sexual activity with partners other than a primary partner a. Group rules in the primary relationship, if relevant b. Occurrences of intimacy and sexual activity c. Experience of the presenting problem in relationships other than a primary relationship d. Gender of other partners e. Safe sex practices 3. Activity with partner of gender opposite from primary orientation, whether patient has a primary partner or not (e.g., same-sex sexual activity if patient presents as heterosexual; heterosexual activity if he/she presents as homosexual) a. Sexual experiences with non-primary gender: fantasies and behaviors b. Feelings about these experiences c. Safe sex practices
success with ViagraÒ and other medical interventions, examining the client’s willingness to try a penile pump or a penile ring may provide the client with more options for achieving an erection. Finally, assessment of cultural factors is needed to facilitate a comprehensive understanding of how diverse factors may or may not be significant to the meaning of sexual functioning and experiences.
The Derogatis Interview for Sexual Functioning (DISF/DISF-SR) The Derogatis Interview for Sexual Functioning (DISF; Derogatis, 1997) is a 25-item semi-structured interview designed to assess multidimensional sexual functioning in both men and women. As described by Meston and Derogatis (2002), this measure is comprised of five domains: sexual cognition/fantasy; sexual arousal; sexual behavior/experience; orgasm; and sexual drive/relationship. The DISF has an additional self-report version of the interview, the DISF-SR, which is similarly constructed. These measures were initially normed on community samples aged 19e64. As a result, the appropriateness of using this measure with older adults experiencing sexual dysfunction has not yet been determined. The structured interview does provide a useful and comprehensive framework for gaining insight into the nature of a client’s complaints in order to inform treatment planning and intervention, and developing norms for older adults is essential for its clinical utility in this population.
Sexual Beliefs and Information Questionnaire (SBIQ-R) The Sexual Beliefs and Information Questionnaire (SBIQ-R; Adams et al., 1996) was developed to determine whether lack of information regarding sexuality and sexual functioning might impair performance and satisfaction among aging males and their female partners. Normed on 271 older male veterans and 116 female partners referred for treatment of sexual dysfunction to a psychology department in a rural area, the SBIQ-R was demonstrated to be internally consistent (a ¼ 0.82). Male
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participants who were administered this survey were an average of 56.6 years old (SD ¼ 14.13), and their female counterparts were an average of 52.9 years old (SD ¼ 17.16). The SBIQ-R consists of five domains including: time/patience; stress/pressure; aging; sexual satisfaction; and miscellaneous/basic knowledge. Initial examination of the scale revealed that most participants had adequate knowledge of sexual functioning as a whole; however, a large percentage held erroneous views about the ability to have a sexually satisfying relationship without intercourse. Participants additionally had incorrect or incomplete knowledge of the role of hormones in impotence. Studies examining the effectiveness of psychoeducation regarding sexual function and communication among partners demonstrated that individual results on the SBIQ-R are sensitive to change over time (Adams et al., 1996). The complete SBIQ-R is provided in Table 13.3.
Table 13.3 Sexual Beliefs and Information Questionnaire (SBIQ-R; Adams et al., 1996) For each of these items, circle “T” if you think the statement is true, circle “F” if you think it is false, and circle “?” if you are not sure. Some of the questions do not have one right or wrong answer. The answers you choose will help us understand how you feel or what you think is right. 1.
T
F
?
2.
T
F
?
3. 4.
T T
F F
? ?
5. 6.
T T
F F
? ?
7.
T
F
?
8.
T
F
?
9. 10.
T T
F F
? ?
11.
T
F
?
12. 13.
T T
F F
? ?
14.
T
F
?
15.
T
F
?
16.
T
F
?
17. 18.
T T
F F
? ?
The penis must be totally erect before a man can have an orgasm (climax) and ejaculate A couple can have a good sexual relationship even if they never have their orgasm (climax) at the same time A condom (rubber) protects against pregnancy and many diseases Lubrication (getting wet) in the female shows sexual excitement like the erection does in the male Anal sex without a condom increases the possibility of getting a sexual disease Masturbation by either a man or a woman is a sign that something is wrong with his or her sex life Sex problems often occur because men and women are too embarrassed to tell their partner what stimulation they need to get aroused Most women are able to be sexually satisfied even if their partner cannot maintain an erection Deep in the vagina is the most sensitive area of the woman’s sexual organs The larger the penis the more physically satisfying it is to the woman during intercourse If a couple cannot have intercourse, there is no way for them to have a satisfying sexual relationship Erections in healthy older men are often not as hard as in healthy younger men As a man gets older, his orgasm (climax) and ejaculation may become less powerful or he may not ejaculate at all on some occasions After middle age, some women may need a longer time to get aroused and may need to use lubricant to have sex without discomfort As a man gets older, his penis usually requires much more touching and a longer time to get erect Stress and fear of failure can cause a man to lose his ability to get or maintain an erection Drinking and smoking have no effect on a man’s sexual abilities Most men begin to experience some erection problems by the time they reach their 40s or 50s (Continued)
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CHAPTER 13 Assessment and Conceptualization of Sexuality
Table 13.3 Sexual Beliefs and Information Questionnaire (SBIQ-R; Adams et al., 1996) Continued 19.
T
F
?
20.
T
F
?
21. 22. 23. 24.
T T T T
F F F F
? ? ? ?
25.
T
F
?
A couple’s sex life can often be improved by taking more time to please the other both in and out of bed Most of the time impotence is the result of the man not having enough male hormones Sexual pleasure without intercourse is against my religion Sex for most people is not like in the moviesdit takes time and effort Some medications can cause men to have problems with erections A man or woman should always be ready to have intercourse if the partner wants it If a man or woman is not able to have intercourse, it is best for the couple to avoid all physical affection.
The Aging Sexual Knowledge and Attitudes Scale (ASKAS) The Aging Sexual Knowledge and Attitudes Scale (ASKAS; White, 1982) was designed to assess sexual attitudes and informational knowledge among older adults, people who work with older adults, and families of older adults (White, 1982). The scale consists of 61 items including 35 true/false questions that measure knowledge of sexuality among older adults and 26 seven-point Likert-type items that assess the respondent’s attitudes (described as permissiveness) towards sexuality in older persons. Initially normed on older adults in nursing homes and the community, nursing home staff, and families of older adults, splitehalf, alpha and testeretest reliabilities for older adults were all in the acceptable range (0.90, 0.91, and 0.97, respectively, on knowledge items and 0.83, 0.76, and 0.96, respectively, on attitude items). White (1982) suggests the use of the ASKAS among clinicians who are interested in exploring how information known to and attitudes held by older adults may serve to exacerbate their experience of sexual dysfunction. Overall, the assessment of sexual functioning in older adults requires a delicate approach in order to promote the development of rapport, provide practical education, make an accurate diagnosis, and offer the most fitting treatment options. It is our view that a comprehensive assessment necessitates a thorough clinical interview and supplemental measures that are interpreted in light of available empirical support. The clinical interview provides clients an opportunity to explore topics and concerns that may not have been previously discussed with other providers, and can provide practitioners with clinical information not readily available in psychometric scales. Likewise, inclusion of appropriate quantitative measures may provide more detailed information about client functioning, attitudes, and knowledge not otherwise addressed in an interview. In the last ten years, there has been an increased focus on the development of validated assessment measures for sexual functioning. Continued work is needed to develop and validate appropriate measures with older adults. Older adults presenting with concerns related to sexual functioning are complex, diverse individuals, and their needs and problems are unique. As a result, it is imperative that interviewers take time to understand the client in the context of their individuality, personal and relationship history, and presenting concerns.
Case Study Teresa and Joe present for an initial psychotherapy assessment session indicating, “We just don’t do it anymore! Sex used to be a regular and good part of our marriage and now it never seems to happen and when it does happen, we don’t enjoy it the way we have in the past.” The couple, Teresa, age 72, and Joe, age 78, report that they have been married for 50 years and had originally met through friends at a Catholic Church event. Teresa stated that
Assessment Tools and Guidelines
351
they dated for one year before getting married and then approximately two years after being married they had their first child. The couple has four children. Joe and Teresa identify as having “different backgrounds” from each other, explaining that Teresa was born in El Salvador, to a family with few monetary resources, while Joe was born in the United States to middle class African American parents. Even though both members of the couple identified as having different ethnic, cultural, and socioeconomic backgrounds, both strongly reported that the Catholic faith was important in their lives growing up and at present. Teresa’s health has been fairly good throughout most of her life with the exception of late-onset diabetes about two years ago. She has been able to manage this condition with the proper medication. Joe has had difficulties with high blood pressure for over 20 years and also manages this condition with medication. Joe indicates that, “Sex has always been an exciting part of our relationship, but it doesn’t seem like my wife is interested anymore. And, when she is, my body doesn’t always cooperate the way that I would like.” Teresa agrees with Joe’s account of their difficulty with this aspect of their relationship. Both members of the couple would like to “go back to having more sex and enjoying it the way that it used to be.” Both Teresa and Joe are retired; Teresa worked as high school teacher for many years while Joe worked as an engineer for an aerospace company for over 40 years. Teresa and Joe posed a unique challenge for the clinician as they presented a complex and diverse picture. A thorough clinical interview was an essential tool and helped the clinician, along with the couple, to elucidate key issues that contributed to the diagnostic and conceptual process. The semi-structured interview outlined by Zeiss, Zeiss, and Davies (1999) was selected for this case as it covers several important domains: psychological; medical; social; and cognitive factors in sexual function and dysfunction. The clinician also considered the four domains of cultural formulation outlined in the DSM-IV-TR when conducting the assessment (APA, 2000). Specifically, the cultural formulation guided the clinician to consider the following four areas. First, the clinician approached the interview with sensitivity to domains of diversity such as each individual’s racial/ethnic background, religion, and socioeconomic status. Cultural explanations of sexual functioning and sexual problems were also explored with the couple, which addressed the second domain of cultural formulation. The potential impact of the couple’s social network and the expectations that go with the roles they play within those systems were also examined in order to attend to the third domain. Finally, the clinician concentrated on becoming aware of his or her own beliefs and attitudes about sexual expression in older adults, as well as background factors that may have affected interactions with the couple. The four domains were woven into the assessment process and aided the clinician in developing a more culturally informed conceptualization and treatment. As mentioned, a fundamental task for the clinician was to establish a safe and comfortable environment in order to facilitate rapport building. Sexuality, for some, can be a sensitive subject, and although Teresa and Joe appear to be at ease talking about their sexual lives, there are multiple factors that surfaced and influenced rapport. To increase the likelihood of developing a comfortable rapport, the clinician utilized concepts consistent with contextually focused therapies (e.g., Feminist Therapy) that included establishing a non-hierarchical relationship with the couple by directly addressing issues of power in the therapeutic relationship, elucidating the assessment process, and directly collaborating with them to form the goals of the assessment. Also, a key component of developing a therapeutic relationship with Teresa and Joe was normalizing their experiences and providing them with education about sexual functioning across the lifespan and particular issues relevant to their situation. To more directly address the presenting issues, the clinician utilized an open and encouraging style allowing for candid discussion of the problems Teresa and Joe have been experiencing. Questions were presented in an open-ended manner, helping to elicit a richer narrative including the various sexual difficulties experienced by the couple. When examining the nature and history of the couple’s sexual issues, the Derogatis Interview for Sexual Functioning (DISF; Derogatis, 1997) was a useful semi-structured inventory, particularly because its design targeted toward both partners in a relationship facilitated assessment of the current level of sexual functioning in both Teresa and Joe. The DISF provided additional information regarding sexual cognition/ fantasy, sexual arousal, sexual behavior/experience, orgasm, and sexual drive/relationship. The clinician also had the option to more specifically tailor the assessment by administering the self-report version (DISF-SR) to both Teresa and Joe. Both Teresa and Joe reported medical issues that are known to affect sexual functioning. A follow-up was conducted in order to gather more detailed information such as onset, symptom severity, any functional impairment in daily activities, and specific medications they were each taking. For Teresa, the clinician focused on information about diabetes and talked with the couple about its impact on vascular and hormonal health, which can affect blood flow, muscle contraction, estrogen production, and other key functions for female sexual health. For Joe, the clinician asked further questions about the degree to which his hypertension has been addressed clinically, knowing that this and other vascular conditions are highly correlated with erectile function and desire, and may be particularly relevant to his current issues.
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Given the couple’s age and various health conditions and medications that may affect cognition, it was essential to incorporate basic memory and thought processing questions within the context of the intake. Cognitive functioning of both Teresa and Joe was explored first with brief questions such as, “Have you had any difficulties with remembering things like names and places?” or “Have you noticed that you have been forgetting things that you would usually remember?” Neither Teresa nor Joe endorsed issues with cognitive function; however, if they had, it would be imperative to pursue this further with screenings and potentially further testing to address issues related to capacity to consent to sexual activities. An integral area to assess is the psychological impact of aging on sexual functioning. Teresa and Joe had questions and concerns for the clinician about body image and loss of physical functioning. Other issues that might arise in the future for this couple include caregiving and potentially loss of a partner. The clinician also asked questions that concern the couple’s beliefs and attitudes about sex, as this often plays an important role in the sex lives of older adults. This was also a time to inquire about past sexual scripts, sexual behaviors that are “off limits” for the couple, and approach more sensitive issues such as monogamy, relationship rules, and safer sex practices. The clinician also focused on what Teresa and Joe want for the future of their relationship, including physical and emotional aspects of intimacy. After the comprehensive assessment was completed, a treatment plan was developed in collaboration with the couple. This included a referral to a sex therapist who is experienced with older adults, as the couple decided to pursue therapy. It was also recommended that Teresa and Joe discuss changes in physical functioning and sexual activity with their physicians, given that they have comorbid medical issues. The clinician thoroughly discussed any referrals and recommendations with the couple so that they have the opportunity to ask questions, voice any concerns, and understand their role in the next steps of treatment.
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Kaiser, F. E. (2003). Sexual function and the older woman. Clinics in Geriatric Medicine, 19, 463e472. Kennedy, C. H. (1999). Assessing competency to consent to sexual activity in the cognitively impaired population. Journal of Forensic Psychology, 1(3), 17e33. Kennedy, C. H. (2003). Legal and psychological implications in the assessment of sexual consent and the cognitively impaired population. Assessment, 10(4), 352e358. Kennedy, C. H., & Niederbuhl, J. (2001). Establishing criteria for sexual consent capacity. American Journal on Mental Retardation, 106(6), 503e510. Kingsberg, S. A. (2000). The psychological impact of aging on sexuality and relationships. Journal of Women’s Health and Gender-Based Medicine, 9(1), 33e38. Kontula, O., & Haavio-Mannila, E. (2009). The impact of aging on human sexual activity and sexual desire. Journal of Sex Research, 46(1), 46e56. Laumann, E. O., Gagnon, J. H., Michael, R. T., & Michaels, S. (1994). The Social Organization of Sexuality: Sexual Practices in the United States (P. 88). Chicago, IL: University of Chicago Press. Laumann, E. O., Glasser, D. B., Neves, R. C. S., Moreira, E. D., Jr., & Global Study of Sexual Attitudes and Behaviors (GSSAB) Investigators’ Group. (2009). A population-based survey of sexual activity, sexual problems and associated help-seeking behavior patterns in mature adults in the United States of America. International Journal of Impotence Research, 21, 171e178. Laumann, E. O., Nicolosi, A., Glasser, D. B., Paik, A., Gingell, C., Moreira, E., Wang, T., & Global Study of Sexual Attitudes and Behaviors (GSSAB) Investigators’ Group. (2005). Sexual problems among women and men aged 40e80: prevalence and correlates identified in the Global Study of Sexual Attitudes and Behaviors. International Journal of Impotence Research, 17(1), 39e57. Lemieux, L., Kaiser, S., Pereira, J., & Meadows, L. M. (2004). Sexuality in palliative care: patient perspectives. Palliative Medicine, 18, 630e637. Lewis-Ferna´ndez, R., & Dı´az, N. (2002). The cultural formulation: a method for assessing cultural factors affecting the clinical encounter. Psychiatric Quarterly, 73(4), 271e295. Lichtenberg, P. A., & Strzepek, D. M. (1990). Assessments of institutionalized dementia patients’ competencies to participate in intimate relationships. Gerontologist, 30(1), 117e120. Lindau, S. T., Schumm, P., Laumann, E. O., Levinson, W., O’Muircheartaigh, C. A., & Waite, L. J. (2007). A study of sexuality and health among older adults in the United States. New England Journal of Medicine, 357 (8), 762e774. Lyden, M. (2007). Assessment of consent capacity. Sexuality and Disability, 25, 3e20. Marshall, B. L. (2006). The new virility: Viagra, male aging, and sexual function. Sexualities, 9(3), 345e362. Mercer, B. (2008). Interviewing people with chronic illness about sexuality: and adaptation of the PLISSIT model. Journal of Clinical Nursing, 17(11c), 341e351. Meston, C. M. (1997). Aging and sexuality. Western Journal of Medicine, 167, 285e290. Meston, C. M., & Derogatis, L. R. (2002). Validated instrument for assessing female sexual function. Journal of Sex and Marital Therapy, 28, 155e164. Mona, L. R., Romesser-Scehnet, J. M., Cameron, R. P., & Cardenas, V. (2006). Cognitive-behavioral therapy and people with disabilities. In P. Hays, & G. Y. Iwamasa (Eds.), Culturally Responsive Cognitive-Behavioral Therapy: Assessment, Practice, and Supervision (pp. 199e222). Washington, DC: American Psychological Association. Mona, L. R., Cameron, R. P., Goldwaser, G., Miller, A. R., Syme, M. L., & Fraley, S. S. (2009). Prescription for pleasure: exploring sex positive approaches in women with spinal cord injury. Topics in Spinal Cord Injury Rehabilitation, 15, 15e29. Morley, J. E., Charlton, E., Patrick, P., Kaiser, F. E., Cadeau, P., McCready, D., & Perry, H. M. (2000). Validation of a screening questionnaire for androgen deficiency in aging males. Metabolism, 49(9), 1239e1242. Mulholland, J. (2007). The racialisation and ethnicisation of sexuality and sexual problems in sex therapeutic discourse. Sex and Relationship Therapy, 22(1), 27e44. Nurnberg, H. G., Hensley, P. L., Heiman, J. R., Croft, H. A., Debattista, C., & Paine, S. (2008). Sildenafil treatment of women with antidepressant-associated sexual dysfunction. JAMA, 300(4), 395e404. Nusbaum, M. R. H., Helton, M. R., & Ray, N. (2004). The changing nature of women’s sexual health concerns through the midlife years. Maturitas, 49, 283e291.
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CHAPTER
14
Nutrition in the Elderly
Kathryn E. Brogan1, K-L. Catherine Jen2 1
Department of Nutrition and Food Science and Department of Pediatrics, Wayne State University, Detroit, MI, USA, 2 Department of Nutrition and Food Science Wayne State University Detroit, MI, USA
INTRODUCTION Nutrition status is fundamental to the quality of life in the aging person as it is closely associated with an older person’s functionality and ability to remain independent. By self report, the top nine chronic health conditions in older persons include hypertension (53.3%), arthritis (49.5%), heart disease (30.9%), any types of cancer (21.2%), diabetes (18.0%), asthma (10.6%), emphysema or chronic bronchitis (10.0%), and stroke (9.3%). Each of these health conditions has nutritional implications (http://www.agingstats. gov/agingstatsdotnet/Main_Site/Data/2008_Documents/tables/Tables.aspx). Early identification of nutritional deficiencies can improve length and quality of years. Additionally, maintenance of a healthy body weight in the face of aging, with the prevention of both underweight and obesity, can reduce the symptoms of chronic health conditions and have a protective effect against mortality (Yan et al., 2004). This chapter will discuss the current nutrition recommendations for the well elderly person, the impact of aging on appetite, the nutrition risks faced by the elderly related to specific chronic diseases, in addition to the influence of medications on food intake and tools for the assessment of nutrition status.
PHYSIOLOGICAL CHANGES ASSOCIATED WITH AGING As humans age, a series of physiological changes inevitably occur. These changes may lead to reduced appetite and food intake, body weight loss, malnutrition, and a compromised immune system. Table 14.1 summarizes the effects of aging on organ systems. In the gastrointestinal (GI) tract specifically, the overall aging effects alter the sensory response and GI motility, and decrease muscle strength and digestive enzyme secretions. Ultimately, decreased absorption of both macronutrients (energy) and micronutrients (vitamins and minerals) is seen. The eating process is negatively affected with sensory losses even before the internalization of foods. Sensory losses tend to progress more rapidly after 70 years of age, but can become noticeable around 60 years (Schiffman & Graham, 2000). Decreases in the acuity of eyesight, smell, and taste often lead to deficits in energy consumption with direct associations for impaired protein and micronutrient status. These possible deficiencies impact function and immunity. While chemosensory losses occur naturally with age, certain disease states (such as cancer), medications, surgical interventions, malnutrition and environmental exposure also complicate the situation. Along with taste impairments, dentition can greatly influence consumption. Loss of teeth and gum diseases are common in the elderly. These conditions make chewing more difficult and limit the food Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10014-4 Copyright Ó 2010 Elsevier Inc. All rights reserved.
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Table 14.1 Physiological Changes Associated with Normal Aging Organ System
Aging Effect
Skin Head and neck Cardiovascular
Dryness, wrinkling, mottled pigmentation, loss of elasticity, dilation of capillaries Macular degeneration, hearing loss Thickening heart wall and valves, increased collagen, increased collagen rigidity, alteration in heart size, decreased elasticity of blood vessels with calcification Stiffening of tissue, decreased vital capacity, decrease maximum oxygen consumption, decreased breathing capacity, decreased propulsive effectiveness of cough reflex Decreased size, decreased glomerular filtration rate (GFR), decreased renal blood flow, decreased active tubular secretion and reabsorption, decreased renal concentrating ability Altered circulating hormone levels and actions Decreased sensory perception, decreased muscle response to stimuli, decreased cognition and memory, loss of brain cells Progressive loss of skeletal muscle, degeneration of joints, decalcification of bone
Pulmonary Renal
Endocrine Nervous Musculoskeletal
Adapted from McGee & Jensen (2000), with permission.
choices. Plant-based foods, like fresh fruits and vegetables, are often eliminated from the daily menu. Soft and easy to chew replacement foods are usually low in dietary fibers, making this population more prone to constipation, as well as vitamin and mineral deficiencies. Without the mechanical manipulation of meats available, a large protein and energy source may be missed. In order to prevent teeth loss at a later stage of life, a lifetime of dental hygiene must be practiced. Assessments of nutritional status include routine checks on oral health and, as appropriate, denture evaluation for proper fit. The swallowing difficulties in the elderly may be a result of the natural aging process and are also highly prevalent in those with neuromuscular diseases or structural abnormalities of the esophagus. Any disordered swallowing, or dysphagia, is defined as difficulty moving food from the mouth to the stomach accompanied by varying levels of aspiration (Easterling & Robbins, 2008). This occurs in 16e22% of persons older than 50 years, 60% of persons in nursing facilities (Firth & Prather, 2002), and in an estimated 45% of institutionalized dementia patients (Easterling & Robbins, 2008). Dysphagia is also associated with increased risk of choking, pneumonia, decreased intake of macro- and micronutrients, dehydration and death. A multidisciplinary team, which includes physician specialists, speech pathologists, nurses, and dietitians, is involved in the evaluation of the individual’s ability to ingest different textures and types of foods. The American Dietetic Association published the National Dysphagia Diet (NDD) in order to establish standard terminology and practice applications of dietary texture modification in dysphagia management (National Dysphagia Diet Task Force, 2002). The labeled levels for liquid viscosity in the NDD (Thin, Nectar-like, Honey-like, and Spoon-thick) are acknowledged to be “a commonsense approach” and “a catalyst for more research” (McCullough, Pelletier, & Steele, 2003). Guidelines regarding the four levels of semisolid/solid foods are as follows: National Dysphagia Diet Semisolid/Solid Food Levels NDD Level 1: DysphagiaePureed (homogeneous, very cohesive, pudding-like, requiring very little chewing ability) NDD Level 2: DysphagiaeMechanical Altered (cohesive, moist, semisolid foods, requiring some chewing) NDD Level 3: DysphagiadAdvanced (soft foods that require more chewing ability) Regular: (all foods allowed)
Physiological Changes Associated with Aging
359
As food moves through the body and begins the process of digestion and absorption, one of the significant changes in the GI system in the elderly is a decrease in the relaxation of the stomach. This results in declining regulation of the satiation system, which is linked to a decrease in nitric oxide and subsequent decrease in the gastric emptying of large meals; leading to an earlier and greater development of fullness (Morley & Thomas, 1999). In addition, circulating concentrations of cholecystokinin (CCK), a GI hormone that signals satiety during digestion, appear to be increased with aging (MacIntosh et al., 2001). The accessory organs (pancreas, gallbladder, liver) and the organs of the GI tract itself (stomach, intestines) produce smaller amounts of enzymes needed for digestion. This results in impaired nutrient absorption leading to energy deficiency in addition to the already reduced intake. Certain specific nutrients are affected more than others by changes in GI function. More than 20% of the population older than 60 years of age may suffer from atrophic gastritis (Park & Johnson, 2006). Inflamed stomach, increased bacteria growth, reduced secretion of hydrochloric acid and intrinsic factors are the characteristics of atrophic gastritis, which will result in reduced appetite and nutrient absorption, such as calcium, iron, zinc, folate, and especially vitamin B12. Vitamin B12 deficiency, also related specifically to a decreased secretion of the intrinsic factor, is a common cause of anemia (macrophagic anemia) in the elderly. Deficiencies from poor intakes of iron (from meats) and folate (from green leafy vegetables) will further worsen the anemic status. Calcium deficiency will make the bone fragile and prone to fractures. Reduced gastric motility due to loss of intestinal wall elasticity with aging is also very commonly seen in this population. Resulting constipation not only affects the quality of life, but also decreases appetite. As humans age, there is a change in body composition. It is common to see older adults losing lean body mass (muscle and skeletal, referred to as sarcopenia) and gaining body fat, even if a person maintains a constant body weight during adult life. Other notable changes include a decrease in intracellular fluid and a change in the distribution of fat stores. All of these changes negatively correlate with altered physiological responses such as reduced cellular capacity to store water, a decline in strength, balance and muscle mass, and increased abdominal obesity. Clinically, older people are predisposed to dehydration, reduced basal metabolism, falls and injury, and central (metabolic syndrome enhancing) weight gain (Brownie, 2006). Due to the changes in body composition, a high waist circumference may be a better predictor for all-cause mortality than a high body mass index and a high waist/hip ratio (Seidell & Visscher, 2000). Two thirds of the U.S. adult population is either overweight [body mass index (BMI) >25.0 kg/m2] or obese (BMI >30.0 kg/m2) (Ogden et al., 2006), and the BMI generally increases with age until age 55 years for men and 65 years for women (Cornoni-Huntley et al., 1991). Even though BMI levels over 25 kg/m2 are a health hazard for adults, particularly those with chronic health conditions, a slightly elevated BMI in the elderly may have some protective effects (Bouillanne et al., 2009). Increased body weight is associated with increased bone mineral density and decreased osteoporosis and hip fracture in older men and women (Felson, Zhang, Hannan, & Anderson, 1993). Weight loss therapy that minimizes muscle and bone loss is recommended for older persons who are obese and who have functional impairments or metabolic complications that can benefit from weight loss (Villareal, Apovian, Kushner, & Klein, 2005). Unintentional weight loss in the elderly is linked to increased morbidity and mortality (Huffman, 2002). Low food consumption combined with poor appetite and chewing problems are associated with the development of malnutrition (Feldblum et al., 2007). Malnourishment, or undernutrition, is a broad term indicating that the intake of dietary nutrients is less than adequate to sustain health (Furman, 2006). The prevalence of undernutrition in older adults ranges from 5% (Sullivan, 2000) to 85% (Kayser-Jones, 2000) depending on the study’s setting, with rates being higher in nursing home residents. Anorexia of aging increases the risk for older persons to develop severe anorexia and weight loss when disease occurs (Morley & Thomas, 1999). In patients with Alzheimer’s disease, for
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CHAPTER 14 Nutrition in the Elderly
example, weight loss correlates with disease progression and a weight loss of at least 5% is a significant predictor of death (White, Pieper, & Schmader, 1998). Diet therapy is often directed at the treatment of protein-energy malnutrition, which may improve the functional capacity in elderly adults with multiple disorders (Akner & Cederholm, 2001). Social and cultural factors also influence the development of malnutrition in the elderly. Poverty, loneliness, and social isolation are the predominant social factors that contribute to decreased food intake in the elderly (Donini, Savina, & Cannella, 2003). Depression is one of the most common reversible causes of weight loss in elderly persons, accounting for up to 30% of undernutrition in medical outpatients (Wilson, Vaswani, Liu, Morley, & Miller, 1998). Memory-related illnesses like dementia or Alzheimer’s can exacerbate malnutrition.
NUTRITION RECOMMENDATIONS FOR OLDER AMERICANS The 2005 Dietary Guidelines for Americans emphasize a diet rich in both fruits and vegetables; fluids; whole grains; low-fat milk; and foods high in potassium. Further recommendations include decreasing sodium intake, and increasing vitamins B12 and D from fortified foods, supplements or both (www. health.gov/dietaryguidelines). In 2005 the United States Department of Agriculture (USDA) also released an updated Food Guide Pyramid and website MyPyramid.gov as an aid for the general population to interpret and follow these guidelines. In order to meet the increased nutritional needs of the elderly an adaptation known as the Modified MyPyramid for Older Adults (MFGP) was developed by Tufts University and the USDA (Lichtenstein, Rasmussen, Yu, Epstein, & Russell, 2008) (Figure 14.1). The modified MFGP is set up to be used in conjunction with the MyPyramid.gov website. The MFGP attends to the increased nutrient needs in this population that are not addressed by MyPyramid.gov (because recommendations are based on calorie levels and not life stage). Specifically, higher Daily Reference Intakes (DRIs) exist for those 70þ years for vitamins B12, D, and B6, and the mineral calcium. It also addresses the fact that elderly individuals are less likely to utilize the internet. Current data suggest that the older adult population is at risk for not meeting the nutrients visually emphasized by the MFGP. The recommendations include: 1. Low-fat and non-fat dairy as well as low-lactose and lactose-free forms, which are depicted to increase calcium intakes. 2. Food icons for deeply colored vegetables and fruits and a wide range of food packaging (i.e., frozen, resealable bags) encourage intakes of vitamins E, K, and potassium. Positive health outcomes including bone health, lower blood pressure, and decreased incidence of cardiovascular disease associated with higher fruit and vegetable intakes are emphasized. 3. High-fiber plant-based foods in both fresh and stewed/canned forms provide micronutrient and laxative benefits even if dentition difficulties exist (fiber supplements are not recommended related to risk of decreased gut mineral absorption). 4. A dietary supplement/fortification flag at the top of the MFGP indicates that supplements or fortified foods containing calcium and vitamin D or vitamin B12 may be needed. Further visual adjustments that address other needs in the elderly include a row of glasses at the base of the pyramid to represent the importance of meeting fluid needs and a second row depicting a variety of age-appropriate physical activities to remind and encourage active lifestyles during the older years. Another guide emphasizing adequate nutrient consumption is called the Dietary Reference Intakes (DRIs). DRIs for macronutrients for elderly have been established. Table 14.2 lists the DRIs for individuals aged 51 or older and can be used as a guideline for diet planning.
Nutrition Recommendations For Older Americans
361
FIGURE 14.1 Modified MyPyramid for Older Adults. http://nutrition.tufts.edu/docs/pdf/releases/ModifiedMyPyramid.pdf
Table 14.2 Dietary Reference Intakes (DRI) for Macronutrients for Adults Aged 51 Years or Older Fata (g) Gender and Age (yr)
Protein (g)
CHO (g)
Fiber (g)
Linoleic Acid
a-Linolenic Acid
Men 51–70 >70 Women 51–70 >70
56 56 46 46
130 130 130 130
30 30 21 21
14 14 11 11
1.6 1.6 1.1 1.1
There is no DRI for total fat intake due to lack of sufficient data. Adequate intake, determined by averaging the observed and experimentally determined approximations, is used for total fat and essential fatty acids.
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NUTRITIONAL ASSESSMENT FOR THE ELDERLY Since poor nutrition and unintentional weight loss are associated with increased morbidity and mortality (Ensrud et al., 2003; Fischer & Johnson, 1990; Huffman, 2002; Newman et al., 2001), it is important to detect the undernourished and/or malnourished elderly before a significant amount of weight has been lost. The American Dietetic Association, the American Academy of Family Physicians and the National Council on Aging have promoted nutritional screening and early nutritional intervention for the elderly in the last two decades. The commonly used nutritional assessment tools include the following.
The Anthropometric Measures, Biochemical Data, Clinical Assessment, Dietary Data and Economic Assessment (the ABCDEs) 1. Anthropometric data. Body weight, height, skinfold thickness, and waist circumference provide a general nutritional status of the individual. These data are easy to obtain and can be collected from large populations without much financial burden by trained health care personnel. These data can then be compared to age- and gender-specific standards or previous measures from the same individual (longitudinal measures). The longitudinal measures will reveal the trend of a person’s overall health status. Even though obesity is a major health hazard in the general population and in the elderly, weight loss is also common in this population and is associated with reduced functionality and increased mortality (Gazewood & Mehr, 1998; Huffman, 2002). The most frequently reported anthropometric data is BMI, which is based on body weight and height [body weight (kg)/ height (m)2]. BMI has been widely used to indicate the disease risks. BMI is classified into the categories as shown in Table 14.3. 2. Biochemical data. These measurements are usually obtained from an individual’s blood, urine or feces samples. The concentrations of nutrients, metabolic byproducts of these nutrients, as well as hormone and some enzymes, can be measured from these samples. Some commonly used biochemical data include blood or urine glucose (as an indicator for diabetes), blood lipid levels (as indicators for cardiovascular diseases), red blood cell count, hemoglobin level or hematocrit percent (as indicators for anemia), blood urea nitrogen (for kidney function), and stool blood (for colorectal cancer), etc. Medical equipment and trained personnel are required to operate the necessary equipment and interpret the results. 3. Clinical assessment. This assessment, performed by health care professionals, examines physical signs of nutrient-related diseases. Every part of the body, such as eyes, hair, neck, fingernails, skin, Table 14.3 Classification of Overweight and Obesity Disease Risk Relative to Normal Weight and Waist Circumference BMI >102 cm
Underweight Normal Overweight Obesity Extreme obesity
18, THEN set value to 3 Minimum Score ¼ 0 (better); Maximum Score ¼ 3 (worse)
PSQILATEN
SLEEP LATENCY
Field recoded:
IF Q5a þ Q2 ¼ 0, THEN set value to 0 IF Q2 0 and 15, THEN set value to 0 IF Q2 > 15 and 30, THEN set value to 1 IF Q2 > 30 and 60, THEN set value to 2 IF Q2 > 60, THEN set value to 3) IF Q5a þ Q2 1 and 2, THEN set value to 1
Field recoded:
IF Q2 0 and 15, THEN set value to 0 IF Q2 > 15 and 30, THEN set value to 1 IF Q2 > 30 and 60, THEN set value to 2 IF Q2 > 60, THEN set value to 3)
Field recoded:
IF Q5a þ Q2 3 and 4, THEN set value to 2 IF Q2 0 and 15, THEN set value to 0 IF Q2 > 5 and 30, THEN set value to 1 IF Q2 > 30 and 60, THEN set value to 2 IF Q2 > 60, THEN set value to 3) IF Q5a þ Q2 5 and 6, THEN set value to 3
Field recoded:
IF Q2 0 and 15, THEN set value to 0 IF Q2 > 15 and 30, THEN set value to 1 IF Q2 > 30 and 60, THEN set value to 2 IF Q2 > 60, THEN set value to 3) Minimum Score ¼ 0 (better); Maximum Score ¼ 3 (worse)
PSQIDAYDYS
DAY DYSFUNCTION DUE TO SLEEPINESS IF Q8 þ Q9 ¼ 0, THEN set value to 0 IF Q8 þ Q9 1 and 2, THEN set value to 1 IF Q8 þ Q9 3 and 4, THEN set value to 2 IF Q8 þ Q9 5 and 6, THEN set value to 3 Minimum Score ¼ 0 (better); Maximum Score ¼ 3 (worse)
Appendix C PSQIHSE
421
SLEEP EFFICIENCY Diffsec ¼ Difference in seconds between day and time of day Q1 and day Q3 Diffhour ¼ Absolute value of diffsec/3600 newtib ¼ IF diffhour 24, then newtib ¼ diffhour – 24 IF diffhour 24, THEN newtib ¼ diffhour (NOTE, THE ABOVE JUST CALCULATES THE HOURS BETWEEN GNT (Q1) AND GMT (Q3)) tmphse ¼ (Q4/newtib) * 100 IF tmphse 85, THEN set value to 0 IF tmphse < 85 and 75, THEN set value to 1 IF tmphse < 75 and 65, THEN set value to 2 IF tmphse < 65, THEN set value to 3 Minimum Score ¼ 0 (better); Maximum Score ¼ 3 (worse)
PSQISLPQUAL
OVERALL SLEEP QUALITY Q6 Minimum Score ¼ 0 (better); Maximum Score ¼ 3 (worse)
PSQIMEDS
NEED MEDS TO SLEEP Q7 Minimum Score ¼ 0 (better); Maximum Score ¼ 3 (worse)
PSQI
TOTAL DURAT þ DISTB þ LATEN þ DAYDYS þ HSE þ SLPQUAL þ MEDS Minimum Score ¼ 0 (better); Maximum Score ¼ 21 (worse)
APPENDIX C Sleep Hygiene Index Rating scale: Never ¼ 0; Rarely ¼ 1; Sometimes ¼ 2; Frequently ¼ 3; Always ¼ 4 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13.
I take daytime naps lasting two or more hours. I go to bed at different times from day to day. I get out of bed at different times from day to day. I exercise to the point of sweating within one hour of going to bed. I stay in bed longer than I should two or three times a week. I use alcohol, tobacco, or caffeine within four hours of going to bed. I do something that may wake me up before bedtime (e.g., play videogames, use the internet, or clean). I go to bed feeling stressed, angry, upset, or nervous. I use my bed for things other than sleeping or sex (e.g., watch TV, read, eat, or study). I sleep on an uncomfortable bed (e.g., poor mattress or pillow, too much or not enough blankets). I sleep in an uncomfortable bedroom (e.g., too bright, too stuffy, too hot, too cold, or too noisy). I do important work before bedtime (e.g., pay bills, schedule, or study). I think, plan, or worry when I am in bed.
Scoring: Item scores are summed providing a global assessment of sleep hygiene.
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CHAPTER 16 Assessing Sleep Problems of Older Adults
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Rosa, R., Bonnet, M. H., & Kramer, M. (1983). The relationship of sleep and anxiety in anxious subjects. Biological Psychology, 16, 119e126. Sanavio, E. (1988). Pre-sleep cognitive intrusions and treatment of onset-insomnia. Behaviour Research and Therapy, 26, 451e459. Schneider, D. L. (2002). Safe and effective therapy for sleep problems in the older patient. Geriatrics, 57(5), 24e35. Seppala, T., Partinen, M., Penttila, A., Aspholm, R., Tiainen, E., & Kaukianen, A. (1991). Sudden death and sleeping history among Finnish men. Journal of Internal Medicine, 229, 23e28. Shiffman, S. (1998). Ecological momentary assessment: health behavior in the field. Annals of Behavioral Medicine, 20, S011. Snyder-Halpern, R., & Verran, J. A. (1987). Instrumentation to describe subjective sleep characteristics in healthy subjects. Res. Nurs. Health, 10, 155e163. Sok, S. R. (2006). Sleep patterns and insomnia management in Korean-American older adult immigrants. Journal of Clinical Nursing 135e143. Spielberger, C. D., Gorsuch, R. L., & Lushene, R. E. (1970). Manual for the State-Trait Anxiety Inventory. Palo Alto, CA: Consulting Psychologists Press. Spielman, A. J. (1986). Assessment of insomnia. Clinical Psychology Review, 6, 11e25. Strohl, K. P. (1996). Diabetes and sleep apnea. Sleep, 19, S225eS228. Totterdell, P., Reynolds, S., Parkinson, B., & Briner, R. B. (1994). Associations of sleep with everyday mood, minor symptoms and social interaction experience. Sleep, 17, 466e475. Trevorrow, T., & Fast, K. (1998). Does sleep affect inpatient stroke rehabilitation? Annals of Behavioral Medicine, 20, S103. U.S. Bureau of Census (2009). Retrieved from http://www.census.gov/ van derHooft, C. S., Jong, G. W., Dieleman, J. P., Verhamme, K. M., van der Cammen, T. J., Stricker, B. H., & Sturkenboom, M. C. (2005). Inappropriate drug prescribing in older adults: the update 2002 Beers criteriada population-based cohort study. British Journal of Clinical Pharmacology, 60(2), 137e144. van Diest, R. (1990). Subjective sleep characteristics as coronary risk factors, their association with type A behavior and vital exhaustion. J. Psychosom. Res., 34, 415e426. Vitiello, M. V., & Borson, S. (2001). Sleep disturbances in patients with Alzheimer’s disease: epidemiology pathophysiology and treatment. CNS Drugs, 15(10), 777e796. Wingard, D. L., & Berkman, P. T. (1983). Mortality risk associated with sleeping patterns among adults. Sleep, 6, 102e107. Wittels, E. H. (1985). Obesity and hormonal factors in sleep and sleep apnea. Medical Clinician of North America, 69, 1265e1280. Zarcone, V. P. (1989). Sleep hygeine. In M. Kryger, T. Roth, & W. Dement (Eds.), Principles and Practice of Sleep Medicine (pp. 490e493). Philadelphia, PA: Saunders. Zorick, F. J., Roth, T., Hartse, K. M., Piccione, P., & Stepanski, E. (1981). Evaluation and diagnosis of persistent insomnia. American Journal of Psychiatry, 138, 769e773.
CHAPTER
Treatment Adherence in Late-Life
17
Erin E. Emery1, Erin L. Woodhead1, Victor Molinari2, Marcia G. Hunt3 1
2
Department of Behavioral Sciences, Rush University Medical Center, Chicago, IL, USA, Department of Aging and Mental Health Disparities, College of Behavioral and Community Sciences, Louis de la Parte Florida Mental Health Institute, University of South Florida, Tampa, FL, USA, 3 VA Connecticut Healthcare System, Department of Psychiatry, Yale University School of Medicine, New Haven, CT, USA
INTRODUCTION In the United States in the last century, human life expectancy increased from 47 years to 77 years (CDC & MCF, 2007), partly due to improvements in health care and managing chronic health conditions. Eighty percent of older adults have at least one chronic illness, and 50% have two or more (NCHS, 2006). Managing these illnesses can be extremely difficult for older adults. According to the World Health Organization (WHO, 2003), treatment adherence rates are approximately 50%, with some variation by illness, treatment regimen, and adherence criteria. The variability in reported rates of adherence to treatment plans is due, in part, to the development of a precise definition of adherence. “Compliance” has been used interchangeably with “adherence,” although researchers have suggested that the term “compliance” minimizes the patient’s role and reflects an overly authoritarian view, whereas “adherence” denotes a more collaborative patient/ physician relationship (Eisenthal, Emery, Lazare, & Udin, 1979; Lutfey & Wishner, 1999). Christensen (2004, p. 3) provides a working definition of patient adherence: “the extent to which a person’s actions or behavior coincides with advice or instruction from a health care provider intended to prevent, monitor, or ameliorate a disorder.” This definition, however, remains focused on the health care provider’s determination of the treatment plan. Since health care in general, and mental health treatment specifically, has an often disagreeable history of forcing or mandating treatment, particularly for marginalized groups, stressing that adherence incorporates a sense of partnership between patient and health care provider is critical.
RATES OF TREATMENT ADHERENCE Treatment adherence rates vary by medical condition and measurement method. Rates of adherence are lowest for preventive regimens (20e50%) and highest for acute treatment regimens (60e80%); chronic condition adherence rates range from 40 to 70% (Christensen, 2004). A range of factors may also impact adherence in any individual. For example, among those with diabetes mellitus, adherence rates are poorest among females, those with comorbid depression, and those with negative attitudes Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10017-X Copyright Ó 2010 Elsevier Inc. All rights reserved.
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toward insulin, especially for those with limited general education and limited diabetic education (Lerman et al., 2009). According to the National Council on Patient Information and Education (2007), at any given time, regardless of age group, up to 59% of those on five or more medications are taking them improperly. This group also reported that 12% of Americans do not fill their prescription at all, 22% take less of the medication than is prescribed on the label, and more than half of all Americans with chronic diseases do not follow their physician’s medication and lifestyle guidance. Given that adults over the age of 65 are prescribed an average of seven to eight daily medications (Orwig, Brandt, & Gruber-Baldini, 2006; Steinman et al., 2006), it is highly likely that most older adult patients do not take their medications as indicated by their physicians. The impact of treatment non-adherence is significant. Ten percent of all hospital admissions and 23% of all nursing home admissions are the result of patients failing to take prescription medications correctly (National Council on Patient Information and Education, 2007). Further, poor medication adherence cost has been estimated to range from $177 billion (Ernst & Grizzle, 2001) to $300 billion annually (DiMatteo, 2004) in total direct and indirect health care costs.
FACTORS INFLUENCING ADHERENCE In light of the high rates of non-adherence across age groups and treatment regimens, researchers have focused efforts on determining what factors influence adherence. For clinicians who routinely work with older adults, it is important to understand how various factors influence adherence, in order to better understand the likely adherence pattern of any given patient.
Sociodemographic Variables Researchers have posited that sociodemographic characteristics may impact adherence by influencing an individual’s ability to acquire knowledge, communicate effectively with their health care providers, and to obtain effective social support around their diagnosis (e.g., Apter et al., 2003). Age has been examined as one predictor of adherence, with mixed results. Among adults with HIV/AIDS between the ages of 25 and 69, older adults were three times more likely than younger adults to be at least 95% adherent, as assessed by an electronic monitoring device (Hinkin et al., 2004; see discussion of assessment devices below). This and other research has suggested that older adults are generally more adherent than younger adults (e.g., Monane et al., 1996; Siegel, Lopez, & Meier, 2007). However, discontinuation of medication has been associated with older age among patients on cardiovascular drug regimens (e.g., Kulkarni, Alexander, Lytle, Heiss, & Peterson, 2006). In light of the mixed results of these studies, drawing conclusions about the influence of age on adherence is difficult, as it is likely a variable that interacts with other factors to predict adherence.
Cognitive Functioning As the complexity of older adults’ treatment regimens increase, the cognitive demands required for adequate adherence may also increase. Older adults with cognitive impairment may lack the memory function or organizational ability to create a schedule around taking medication, engage in self-care behaviors, or keep appointments. In fact, patients with cognitive impairment have been found to have a 2.3 times greater risk of adherence failure, as compared to patients without cognitive impairment (Hinkin et al., 2002). This difference may be primarily due to differences in executive functioning and verbal memory (Stoehr et al., 2008). Cognitive status has also been found to be an independent
Factors Influencing Adherence
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predictor of missed primary care appointments (Mackin & Arean, 2007). Thus, assessment of multiple cognitive domains is helpful for understanding adherence.
Health Literacy and Numeracy Even for older adults who are cognitively intact, deciphering health-related information can be difficult. Health literacy is defined as one’s ability to “obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Institute of Medicine, 2004, p. 4). Results of the 2003 National Assessment of Adult Literacy indicated that adults over the age of 65 had the lowest health literacy compared to other sampled aged groups (Kutner, Greenberg, Jin, & Paulsen, 2006). Of those over age 65, 29% achieved a “below basic” level of health literacy, 30% achieved a “basic” level, 38% achieved an “intermediate” level, and only 3% achieved a “proficient” level (Kutner et al., 2006). Thus, the majority of older adults have difficulty summarizing and making simple inferences from prose text, locating information in complex documents, and completing arithmetic operations that require more than one step. Many of these processes are needed to understand medication instructions, dosing schedules, and the risk of potential side effects. The concept of numeracy has also recently been discussed by several researchers (e.g., Peters, 2008) as being different from health literacy. Numeracy has been defined as “the degree to which individuals have the capacity to access, process, interpret, communicate, and act on numerical, quantitative, graphical, biostatistical, and probabilistic health information needed to make effective health decisions” (Golbeck, Ahlers-Schmidt, Paschal, & Dismuke 2005, p. 375). Due to the potentially risky nature of some medical decisions, the idea of numeracy has been examined in relation to one’s ability to understand the risks inherent in a decision. In a study among community-dwelling older adults, the majority of participants were able to assess the magnitude of risk properly and to respond correctly to health-based calculations of probabilities, proportions, and percentages (Donelle, Hoffman-Goetz, & Arocha, 2007). However, when asked questions about broad numerical concepts, the majority of participants had difficulty comprehending the concept of probability, converting a percentage value to a proportion and converting a proportion to a percentage. Increased age was associated with decreased general numeracy skills, particularly among older adults age 80 to 90. In light of these findings, health care providers should not assume that a patient’s level of health literacy and numeracy is adequate to comprehend medication instructions, or to understand the specific symptoms or medical terms related to their disease. Davis and colleagues (1993) created the Rapid Estimate of Adult Literacy in Medicine (REALM) to identify patients with low literacy in medical settings. To maximize utility, a 7-item short form (REALM-SF) was created, as seen in Figure 17.1 (Arozullah et al., 2007). The REALM-SF was found to have adequate concurrent validity (r ¼ 0.88 e 0.97, p < 0.0001) with the Peabody Individual Achievement Test-Revised (Markwardt, 1998), the Wide Range Achievement Test (Wilkinson, 1993), and the Slosson Oral Reading TestRevised (Slosson, 1990); testeretest reliability was found to be excellent (r ¼ 0.99, p < 0.001). Shea and colleagues (2004) found that REALM-SF scores were significantly related to education, age, and race, but not gender. When stratified by education, differences between African Americans and Caucasians remained significant. Recently, a numeracy scale has been developed that is specific to numeracy skills used in diabetes management (Figure 17.2; Huizinga et al., 2008). The Diabetes Numeracy Test (DNT) is available in a full 43-item version and a shortened 15-item version. The DNT was validated on a sample of patients with type 1 and type 2 diabetes (average age approximately 55 years). Approximately 69% of participants had greater than 9th grade literacy as assessed by the REALM
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CHAPTER 17 Treatment Adherence in Late-Life Rapid Estimate of Adult Literacy in Medicine Short Form (REALM-SF) Suggested introduction: “We are studying medical word reading in order to improve communication between healthcare providers and patients. Here is a list of medical words that may be difficult to read.” Interviewer: Show the participant the Word List.
Then say, “Starting at the top of the list, please read each word aloud to me. If you don’t recognize a word, you can say ‘pass’ and move on to the next word. Your results will be kept strictly confidential and will not be included in your other official medical records.” Interviewer: If the participant takes more than 5 seconds on a word, say “pass” and point to the next word. Hold this sheet so that it is not visible to the participant. Fat
Not scored
Flu
Not scored
1. Behavior
1
Correct
2
Mispronounced
3
Not attempted
2. Exercise
1
Correct
2
Mispronounced
3
Not attempted
3. Menopause
1
Correct
2
Mispronounced
3
Not attempted
4. Rectal
1
Correct
2
Mispronounced
3
Not attempted
5. Antibiotics
1
Correct
2
Mispronounced
3
Not attempted
6. Anemia
1
Correct
2
Mispronounced
3
Not attempted
7. Jaundice
1
Correct
2
Mispronounced
3
Not attempted
REALM-SF Scoring Fat
Total Score (0—7)
Grade
0
≤ 3rd grade
Behavior
1-3
4th-6th grade
Exercise
4-6
7th-8th grade
Menopause
7
Flu
th
≥ 9 grade
Rectal Antibiotics Anemia Jaundice
FIGURE 17.1 Rapid Estimate of Adult Literacy in Medicine Short Form. (REALM-SF: Arozullah et al., 2007)
and 31% had greater than 9th grade numeracy as assessed by the Wide Range Achievement Test (Wilkinson, 1993). With this population, both the full and shortened versions of the DNT had acceptable internal consistency and construct validity. The DNT is publicly available through the Vanderbilt Diabetes Research and Training Center (http://www.mc.vanderbilt.edu/diabetes/drtc/ preventionandcontrol/tools.php).
Factors Influencing Adherence
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FIGURE 17.2 Sample Items from the Diabetes Numeracy Test. (Huizinga et al., 2008)
Patient Beliefs About the Illness or Disability In a recent meta-analysis of the impact of patient beliefs on adherence, DiMatteo and her colleagues (2007) found that the odds of adherence were 2.5 times greater in those patients who believed that the disease to be treated was severe and a potential threat. Many theories have been developed about the role of patient beliefs about illness. Attribution theory examines the extent to which one believes an illness is related to internal causes, such as one’s own behavior, or external causes, such as one’s fate or genetics (cf., Horne, Weinman, & Hankins 1999). These attributions are related to beliefs about cure, and can influence one’s adherence to treatment. Health locus of control (HLOC) theory also examines beliefs about the controllability of health and illness. Internal HLOC (believing one can control one’s own health) may encourage more health promotion behaviors and may be linked to better adherence to treatment regimens than external HLOC (believing that factors outside of individual control are responsible for health outcomes). However, as discussed by Horne and Weinman (1998), a global measure of health locus of control such as the Multidimensional Health Locus of Control Scales (Wallston, Wallston, & Peabody, 1978) has little utility for predicting adherence behavior. Diseasespecific perceived control scales, such as the Perceived Control of Diabetes Scales, have been shown to be more useful in predicting health behavior for specific chronic illnesses (Bradley, 1994).
Cultural Factors Attitudes about illness may also be impacted by ethnicity, culture, or religion. In a review of literature on hypertension among older adults, Ontiveros and colleagues (1999) found that African American older adults were more likely to view hypertension as related to stress and health behavior, while Caucasians attributed the disease to genetic or mechanistic factors, and Latino older adults viewed hypertension as a normal part of aging, thus less treatable. It is highly likely that these beliefs would impact adherence to a treatment plan that was not consistent with these beliefs. In fact, the review
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CHAPTER 17 Treatment Adherence in Late-Life This questionnaire describes situations related to health. Please read each situation and imagine that it is happening to you. Use the following scale to indicate how similar the thought is to how you would think in that situation: Not at all like I would think
Only a little like I would think
Moderately like I would think
Quite a bit like I would think
Almost exactly like I would think
1
2
3
4
5
1. Several of your coworkers have come down with the flu. You hear on the news that there is a flu outbreak and that people who are in contact with infected individuals should get immunizations to reduce their chances of getting ill. You find yourself thinking, "I had a flu vaccination last year and got sick anyway, immunizations never do me any good." 2. During a routine physical examination, your doctor notices a mole on your hand and suggests that you see a specialist to have it examined further. You recall that a friend of yours had a similar mole for years and it never caused her any problems. You think, "I'm sure it won't ever cause me a problem either." 3. During your last checkup, your cholesterol level was high, and your doctor recommended that you reduce the fat in your diet. Today at lunch you notice that all of your coworkers were eating hamburgers and french fries. You think, "If everybody eats like this, it can't be that bad for you." 4. Your doctor prescribes a medication for an illness and instructs you to finish the entire bottle of pills. After taking half of the medication, you notice that your symptoms have cleared up. You find yourself thinking, "If I don't feel sick anymore, the medicine is unnecessary." 5. Your doctor recommends a new medication for an ongoing health problem and indicates that about 10% of patients experience unpleasant side effects from the medicine. You think to yourself, "If anyone is going to have side effects, it's going to be me." 6. You have experienced an injury that has left you unable to work. Your doctor recommends a treatment that should allow you to return to work but only on a part-time basis. You find yourself thinking, "If the treatment can't cure me completely, it is not really worthwhile.” 7. You have recently undergone surgery to correct a health problem. Your doctor informs you that the surgery was not successful and will need to be repeated. You find yourself thinking, "If it didn't work the first time, it probably never will in my case." 8. During a routine check-up, your doctor emphasizes the importance of exercise and eating right to prevent health problems. You notice that the doctor is quite overweight. You think to yourself, "If good eating habits and exercise were really important, he would lose weight himself." 9. Your doctor is instructing you in how to take a new medication. In the middle of the discussion, the doctor is called out of the room and says that a nurse will finish explaining how to use the medication. You find yourself thinking, "If this new treatment was really important, the doctor would finish giving me the instructions himself." 10. Because both of your parents had heart disease, you know that your risk for this illness is much greater than it is for most people. At a recent checkup, your doctor emphasizes that by making certain changes in your lifestyle, you would reduce your risk of heart disease by 50%. You find yourself thinking, "If heart disease runs in my family, whether or not I get it is really beyond my control." 11. You have been following a specific nutritional plan prescribed by your doctor for an ongoing health problem. This plan requires you to avoid desserts and other high-sugar foods. At a birthday party, everyone is eating cake. You think to yourself, "If I don't eat a piece of cake too, I'll spoil the party."
12. You have been taking a medication for six months and your medical problem has not improved. Your doctor has suggested a new drug. You think to yourself, "If the last medication didn't help, a new one won't do any good." 13. You were injured in a car accident two months ago and have been in physical therapy since then. Your doctor had predicted that you would be fully recovered by now, but you have only partially recovered. You think to yourself, "These past two months have been a complete waste." 14. You smoke and are overweight but have never had a major health problem. At a recent checkup, your doctor tells you that these habits put you at risk for health problems down the road. Both of your parents have similar habits and have lived long healthy lives. You find yourself thinking, "Smoking and eating too much just aren't a problem in my case."
FIGURE 17.3 Irrational Health Belief Scale. (Christensen, Moran, & Wiebe, 1999)
indicated that older Caucasians were more likely to have a primary care physician and have had a blood pressure check than were African Americans or Latinos, while emergency room use was higher among African Americans. African Americans have also been found to be more likely to use home remedies than Caucasians (Brown & Segal, 1996).
Factors Influencing Adherence
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15. You have been feeling generally fatigued since you started a new medication last month. Your doctor told you that the medication is extremely effective but that fatigue is a common side effect. You think to yourself, "Something that makes me feel this tired can't be any good for me." 16. You see a report in the media that suggests the majority of people still do not wear seat belts when they drive. You find yourself thinking, "There are so many people driving without using seatbelts, it can't be that dangerous." 17. You are planning an overseas trip, and your doctor recommends you receive a set of immunizations before you leave. You visited this same place last year without receiving any immunizations and did not become ill. You think to yourself, "If I didn't get ill last time, I'm sure I won't on this trip." 18. You are scheduled to undergo a medical test at the end of the day, and your doctor has instructed you not to eat any lunch before the procedure. That same day you are asked to attend a lunch meeting at work. You think to yourself, "I can't attend the meeting if I don't eat like everyone else." 19. You learn that you have a mild medical condition that causes you no discomfort but requires lifetime treatment with medication. Your doctor assures you that you will not experience any significant side effects from the medication and the condition is not likely to interfere with your functioning in a noticeable way. You find yourself thinking, "If I have to take this medication, my life will never be the same." 20. All of your family members (or roommates) have come down with a bad case of the flu in the past week, but so far you feel fine. You receive a message from their doctor that you should take special precautions to avoid becoming ill as well. You think to yourself, "If I'm not sick yet, I am probably immune."
FIGURE 17.3 Irrational Health Belief Scale (Cont’d).
Other cultural norms may also impact treatment adherence. For example, Japanese older adults have been found to be more likely to follow physicians’ orders (Iihara, et al., 2004). This may be related to the culture dictating that physicians play a more authoritative role, and to Japan’s universal health care system, which allows for access to health services. In contrast, older African Americans have been found to experience distrust of the American medical system, and thus are less likely to adhere to a treatment plan dictated by their physician (Siegal et al., 2007). Older Russian immigrants to the United States have expressed similar distrust of the American health care system, as well as the media, regarding health information (Benisovich & King, 2003). Religious and spiritual beliefs warrant consideration when examining predictors of adherence, particularly among older adults. Some treatments are inconsistent with religious values, and some cultures are less likely to communicate this to providers unless directly asked. Further, patients may have specific beliefs, such as that an illness is a punishment from God, which may act as a barrier to treatment adherence. Although the relation between religious beliefs and adherence has not been well explored empirically among older adults, health care providers are encouraged to be sensitive to beliefs and practices that may impact adherence (Zivin & Kales, 2008).
Case Study Mr Williams, a 72-year-old African American man, was hospitalized following a heart attack. His cardiologist, who had prescribed an ACE inhibitor, and recommended a specific diet and exercise plan a month prior, was perplexed by Mr Williams’ choice not to fill the prescription or make any changes in his health behaviors. As the physician considered the lecture she was about to give the patient about his non-adherence, she noticed the Bible at his bedside. She asked Mr Williams if prayer was helping him cope with his health event. Mr Williams indicated that he was praying for forgiveness, but felt that the hypertension and heart attack were appropriate penance for misdeeds in his past. With some discussion, he indicated that he intentionally disregarded the physician’s recommendations because he felt that he deserved God’s punishment of cardiac disease. The physician consulted the chaplain, who administered the Brief RCOPE. Mr Williams’ scores indicated a very high level of negative religious coping and minimal positive religious coping. The chaplain was able to discuss Mr Williams’ experience of guilt and ways that he may be able to explore treatment plan options to preserve his cardiac health and spiritual well-being.
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CHAPTER 17 Treatment Adherence in Late-Life For the following questions, please circle the number that best corresponds to your views: How much does your illness affect your life? 0 1 No affect at all
2
3
4
5
6
7
8
9
6
7
8
9
10 Severely affects my life
How long do you think your illness will continue? 0
1
2
3
4
5
A very short time
10 Forever
How much control do you feel you have over your illness? 0
1
2
3
4
5
6
7
8
9
Absolutely no control
10 Extreme amount of control
How much do you think your treatment can help with your illness? 0
1
2
3
4
5
6
7
8
9
Not at all
10 Extremely helpful
How much do you experience symptoms from your illness? 0
1
2
3
4
5
6
7
8
9
No symptoms at all
10 Many severe symptoms
How concerned are you about your illness? 0
1
2
3
4
5
6
7
8
9
Not at all concerned
10 Extremely concerned
How well do you feel you understand your illness? 0
1
2
3
4
5
6
7
8
9
Don’t understand at all
10 Understand very clearly
How much does your illness affect you emotionally? (e.g., does it make you angry, scared, upset or depressed? 0
1
2
3
4
Not at all affected emotionally
5
6
7
8
9
10
Extremely affected emotionally
Please rank in rank-order the three most important factors that you believe caused your illness. The most important causes for me: 1. __________________________ 2. __________________________ 3. __________________________
FIGURE 17.4 Brief Illness Perception Scale. (Broadbent, Petrie, Main, & Weinman, 2006)
This example highlights not only the importance of assessing religious beliefs related to treatment adherence, but also the importance of a health care team working together to identify agreedupon treatment goals and plans that fit with the patient’s beliefs. The original RCOPE, a 17 factor measure of religious coping, with reliability coefficients ranging from 0.67 to 0.94, can also help to elucidate these beliefs (Pargament, Smith, Koenig, & Nielsen, 1998). A 14-item version (Brief RCOPE) measuring positive and negative religious coping has been used with older adult hospital patients with strong internal consistency (0.81e0.90) and good discriminant validity (Pargament, Smith, Koenig, & Perez, 1998; Pargament, Koenig, & Perez, 2000). Positive coping items in
Factors Influencing Adherence
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BMQ-Specific Your views about medicines prescribed for you* ·
We would like to ask you about your personal views about medicines prescribed for you.
·
These are statements that other people have made about their medicines.
·
Please indicate the extent to which you agree or disagree with them by ticking the appropriate box.
·
There are no right or wrong answers. We are interested in your personal views.
Rated: strongly agree, agree, uncertain, disagree, strongly disagree My health, at present, depends on my medicines Having to take medicines worries me My life would be impossible without my medicines Without my medicines I would be very ill I sometimes worry about long-term effects of my medicines My medicines are a mystery to me My health in the future will depend on my medicines My medicines disrupt my life I sometimes worry about becoming too dependent on my medicines My medicines protect me from becoming worse *Note: To elicit beliefs about individual components of the treatment regimen the reference statement should refer to the medicine by name. e.g., Your views about aspirin prescribed for you. Additionally, items can refer to a named illness e.g., Your views about medicines prescribed for your asthma. BMQ-General Your views about medicines in general ·
We would like to ask you about your personal views about medicines in general.
·
These are statements that other people have made about medicines in general.
·
Please indicate the extent to which you agree or disagree with them by ticking the appropriate box.
·
There are no right or wrong answers. We are interested in your personal views.
Rated: strongly agree, agree, uncertain, disagree, strongly disagree Doctors use too many medicines People who take medicines should stop their treatment for a while every now and again Most medicines are addictive Natural remedies are safer than medicines Medicines do more harm than good All medicines are poisons Doctors place too much trust on medicines If doctors had more time with patients they would prescribe fewer medicines
FIGURE 17.5 The Beliefs About Medicines Questionnaire. (Horne, Weinman, & Hankins, 1999)
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CHAPTER 17 Treatment Adherence in Late-Life
response to a specific stressor include, “looked for a stronger connection with God” and “tried to see how God might be trying to strengthen me in this situation”; negative coping items include, “felt punished by God for my lack of devotion” and “questioned the power of God” (Pargament, Smith, Koenig, & Perez, 1998). Both measures employ a 4-point Likert scale reflecting the degree to which each mode of coping was employed in dealing with a stressor, with response options ranging from “not at all” to “a great deal.”
Social Support In addition to spiritual support, social support may encourage optimism and increase self-esteem related to management of the illness. Family members and friends may provide practical assistance and may buffer the stress of a chronic illness. DiMatteo’s (2004) meta-analysis of the role of social support in adherence to medical treatment plans indicated that practical support, cohesive families, and living with a spouse were associated with improved treatment adherence. The same review suggests that attention also needs to be paid to the potential negative influence of social support, both intentional and unintentional (DiMatteo, 2004; Gallant, 2003). Facilitating discussion between a patient and family about the specific type of help they desire in their treatment regimen is recommended. Measures such as the Interpersonal Support Evaluation List (Cohen & Hoberman, 1983) or the Diabetes Social Support Questionnaire (Schlenk & Hart, 1984) may also be considered.
Personality/Psychopathology Unu¨tzer and colleagues (2009) found that over the course of one year, older adults presenting in primary care with depression incurred total health care costs that were almost double those of individuals presenting without depression. This relationship is speculated to be partially related to the impact of mental health on treatment adherence (DiMatteo, Lepper, & Croghan, 2000). Researchers hypothesize that the presence of a mood disorder may impact patients’ ability to follow through on a treatment regimen, potentially due to the impaired attention, energy, initiation, and motivation, along with feelings of helplessness, hopelessness, and worthlessness that are often experienced by patients with depression. Cognitive dysfunction associated with late-life depression may impair the ability of older adults to organize and implement an agreed-upon treatment plan, particularly for those with existing cognitive impairment (Hughes & Ganguli, 2009). Depression may also impact other measures related to adherence, such as irrational health beliefs (r ¼ 0.28, p < 0.001; Christensen et al., 1999), some aspects of illness perception (e.g., illness coherence: r ¼ 0.21, p < 0.001; Figueiras & Alves, 2007), beliefs about medicines (see Brown et al., 2005), and religious coping (r ¼ 0.31, p < 0.001; Pargament et al., 1998). Depressed patients of all ages have been found to be three times less likely to be adherent to a medical treatment plan than those not experiencing depression (DiMatteo et al., 2000). Bell and colleagues (2010) found that rural older adults (n ¼ 696) with higher depression scores were less likely to engage in recommended exercise and diet plans, or follow recommendations for increased frequency of foot checks. Depression has also been found to be an independent predictor of missed primary care appointments (Mackin & Arean, 2007). DiMatteo and colleagues’ (2000) meta-analysis indicated that anxiety had a less clear relation to adherence, though warrants further study. The fact that depressed patients may have lower adherence to treatments for their other chronic diseases makes depression assessment and intervention important. There are several quick screening instruments for depressive symptoms that are validated for use among older
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adults and work well in a busy medical clinic, such as the Geriatric Depression Scale (GDS; Yesavage et al., 1982) and the Patient Health Questionnaire-9 (PHQ-9; Spitzer, Kroenke, & Williams, 1999). Administering a quick screening instrument for depressive symptoms may aid in the assessment of adherence factors. There are also empirically supported treatments for depression which, when delivered successfully, may minimize some barriers to treatment adherence (e.g., cognitive behavioral therapy, interpersonal psychotherapy for depression, problem-solving therapy). Personality characteristics have also been examined as predictors of treatment adherence. Researchers have used the Five-Factor Personality Model (Costa & McCrae, 1992) to study how various dimensions of neuroticism, extraversion, openness to experience, agreeableness, and conscientiousness relate to adherence behaviors. Broadly, individuals higher in neuroticism may engage in fewer positive health practices, whereas those high in conscientiousness may engage in more positive health practices and less risk-taking behavior (cf., Christensen, 2004). When examining older adults’ adherence to general health behaviors (e.g., social activities, relaxation), Marks and Lutgendorf (1999) found that high levels of conscientiousness and low levels of neuroticism (as measured by the Big Five Inventory; John, Donahue, & Kentle, 1991) were associated with a greater likelihood of engaging in the behavior, further supporting the importance of personality characteristics in late-life health behavior. Among older adults, Insel and colleagues (2006) found that higher levels of independence, as assessed by the Six-Factor Personality Questionnaire, were associated with lower adherence to prescribed medication. There is relatively little examination of the impact of personality characteristics on adherence among older adults, although one might presume that the associations should be similar across the lifespan due to the proposed stability of personality traits. Christensen (2004) provides a comprehensive review of the literature on personality traits and adherence, concluding that higher levels of conscientiousness may distinguish between patients who are adherent versus non-adherent. Further research is needed to clarify the relationship between neuroticism and adherence, and to further explore the emerging relation between the “Type A” behavior pattern, characterized by cynicism, mistrust of others, and a generally oppositional style, and adherence to medication and treatment regimens (e.g., Rhodewalt & Fairfield, 1990).
Case Study Ms Williams is an 82-year-old divorced African American woman with diabetes, hypertension, hypercholesterolemia; she had difficulty organizing her medications, and as a result, all three of these illnesses were not well controlled. Her cardiologist had recommended neuropsychological evaluation, but Ms Williams refused. Ms Williams also had a history of depression beginning at age 12, for which she had been in psychotherapy for the last year. Although her symptoms were still significantly distressing (PHQ-9 ¼ 17/30), she was able to re-engage relationships with her estranged children, resume the daily exercise regimen recommended by her cardiologist, and began to utilize a pill box effectively for her medications. Ms Williams’ psychologist repeatedly recommended antidepressant medication for her ongoing depressive symptoms, but Ms Williams was adamant that she would not allow anyone else to “control her mind” with medications. Extensive evaluation of her concerns about the medications yielded the finding that Ms Williams believed that psychiatric medications taken by her African American neighbors in Alabama made them “crazy,” which led to involuntary hospitalization by the White doctors. She refused to allow herself to be degraded that way.
This case study highlights the cultural and historical experience factors that can lead to beliefs about illness and treatments, as well as the impact that depression can have on treatment adherence for other illnesses.
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Serious Mental Illness Adherence to medication regimens is particularly important for older adults with serious mental illness (SMI, e.g., schizophrenia, bipolar disorder). It is well known that psychiatric medication compliance is a major factor in relapse for those with SMI, and that late-life presents a unique set of challenges for this population with regard to adhering to proper medication schedules. Deliberate medication nonadherence may be less of a problem for older adults with SMI; unintentional non-adherence may be more of a problem (Depp & Lebowitz, 2007). That said, the mental health care system has a history of being less than collaborative in treatment planning and implementation, with forced or mandated treatment for many with serious mental illness. Partnership in treatment planning may be far more effective in increasing treatment adherence. The Recovery movement in mental health is an excellent example of how this partnership can be conceptualized. Mental health recovery has been defined by the Substance Abuse and Mental Health Services Administration (SAMHSA, 2004) of the United States in their consensus statement as “.a journey of healing and transformation enabling a person with a mental health problem to live a meaningful life in a community of his or her choice while striving to achieve his or her full potential.” The components of Recovery are applicable to all age groups and thought to drive overarching themes such as motivation and a sense of agency and autonomy which are likely to directly impact treatment adherence. That is, if a consumer of health services is able to direct their own treatment in concert with a treatment provider as a means to meet self-defined goals, it is very likely to increase a sense of ownership, partnering, and investment in self-care and, from a behavioral point of view, increase treatment adherence so that goals are reached. The following is an example of how utilizing Recovery components can help specifically with treatment adherence for medication management:
Case Study Mr Juarez is a 68-year-old man who has late-onset schizophrenia and who was very reluctant to take medication or see his therapist. Many supports were put in place by his treatment team, including visiting nurses for medication management to assist with any forgetfulness or confusion with medication, and reminder calls for therapy appointments. While these supports seemed to help for short periods of time, Mr Juarez would often stop his medication long enough that hospitalization was required for his symptoms to remit. Mr Juarez’s new treatment provider utilized a Recovery approach that was holistic, included self-direction and individualization, and increased his sense of empowerment. Assessment was focused on identifying Mr Juarez’s goals, which included finding a new apartment and getting a dog. Mr Juarez began to understand that maintaining his mental health would allow him to care for a dog and new apartment, thereby changing his life in a direction he very much desired. He also saw that committing to taking his medication regularly would be the quickest and most direct path to attaining his goals. After some months, he was managing his medication much more effectively, was looking for a new apartment, and started saving money for a dog.
As discussed above, working within the Recovery model may be instrumental in increasing adherence to a collaboratively developed treatment plandfor serious mental illness or any illness requiring a treatment plan. There are many measures that are “Recovery oriented” or that are designed to measure aspects of Recovery, including the Illness Management and Recovery Scales (Salyers, Godfrey, Mueser, & Labriola, 2007), Recovery Self Assessment (O’Connell, Tondora, Croog, Evans, & Davidson, 2005), and the Recovery Oriented Systems Indicators Measure (Onken, Dumont, Ridgway, Dornan, & Ralph, 2005), all of which have at least preliminary psychometrics. These measures are largely systems- and/or provider-focused. Measures of provider/patient communication and shared decision making, discussed in this chapter, may also be helpful in this regard.
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MEASURING MEDICATION ADHERENCE The most common method of assessing medication adherence is patient self-report (Gao & Nau, 2000), which may consist of simple questions asked by the provider or more complex questionnaires. Self-report has generally been found to be acceptably reliable and valid (Morisky, Green, & Levine, 1986; Rudd, 1993; Straka, Fish, Benson, & Suh, 1997), including in comparison to gold standard physical measures such as blood tests (Graham et al., 1994). Recall is a significant disadvantage for this form of measurement, however, particularly for older adults (see Ecological Momentary Assessment below for options to minimize this concern). In this section, we will review common methods and measures for assessing medication adherence.
Self-Report Measures of Adherence Morisky Scales Perhaps the most commonly used self-report measure of medication adherence in the last 20 years is the original Morisky Scale (Morisky, Green, & Levine, 1986), a four-item measure that assesses likelihood of medication adherence. The four items are: (1) Do you ever forget to take your medicine? (2) Are you careless at times about taking your medicine? (3) When you feel better, do you sometimes stop taking your medicine? (4) Sometimes if you feel worse when you take the medicine, do you stop taking it? The measure has been found to have adequate internal consistency (a ¼ 0.61), sensitivity (0.81), and specificity (0.44) (Morisky, Green, & Levine, 1986). Morisky and his colleagues (2008) created an expanded version (eight items) of this measure called the Medication Adherence Scale (Table 17.1), which is correlated with the original version (r ¼ 0.64; p < 0.05). In the validation sample of 1367 predominantly low-socioeconomic status minority participants with hypertension (age mean 52.5, SD ¼ 12.2 years), the scale was reliable (a ¼ 0.83), sensitive (93%), and specific (53%). Adherence scores were divided into high (8þ), medium (6 to 0.95) in both English and Spanish speaking elders (Loewenstein et al., 1995) and has also demonstrated high sensitivity (0.98) in detecting dementia among older African Americans using the retrieval cutscore of 30 (Mast et al., 2001). The slope of learning over five trials has been associated with daily functioning (IADLs) (Mast & Allaire, 2006). The FOME places fewer demands on processing speed than other list learning measures such as the California Verbal Learning Test (CVLT) or the Hopkins Verbal Learning Test (HVLT). Because the learning and encoding of words occurs at a slower pace on the FOME, it may be a purer measure of memory function than other measures which may partially confound memory and processing speed, which is the ability most affected by normal aging (Salthouse, 1993, 1994). Due to the time and materials needed to administer the FOME it is usually administered as part of a brief battery rather than a stand-alone screener. The FOME is, however, a useful dementia screen and a viable alternative for screening elders with hearing and/or visual impairment (Chung & Ho, 2009). The development of a shorter, three-trial version of the FOME may increase its use as a screener.
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However, when combined with other measures such as the DRS-2, the FOME can be very effective in evaluating dementia (Mast, MacNeill, & Lichtenberg, 2000). Because the brief batteries reviewed lack a strong emphasis on executive functioning, supplemental tests of this construct should be included (e.g., Trail Making Test, Controlled Oral Word Association Test). The use of both screening measures and brief batteries is demonstrated in the case study below, along with supplementation with measures that are sensitive to executive dysfunction.
Case Study Ms P is a 90-year-old woman whose son and primary care physician requested an evaluation of her memory and cognitive functioning. She had been living independently until a year ago when she fell and fractured her leg. Although she was reportedly living independently, medical records indicate that she has had some difficulty with balance, repetitive language, and forgetfulness over the past two to three years. Her primary care physician screened her with the MMSE two years ago and she received a score of 27 out of 30. More recently she was given the Mini-Cog. She initially recalled 3 of 3 words but could not recall any after a short delay. Her clock drawing test score was 2 out of 4. She had previously been diagnosed as having Mild Cognitive Impairment by her PCP, but the recent failure on the Mini-Cog screener prompted further testing with a brief battery.
Test results Ms P’s performance on a test of reading ability (an indicator of premorbid functioning) was average (post-high school level; Scaled Score ¼ 110). Her general cognitive functioning was in the low average range (DRS-2 Total ¼ 120). Her performance on the Attention subscale of the DRS-2 was high average (72nd–81st percentile) and the Construction and Conceptualization subscales were average (41st–59th percentile). Her DRS-2 Memory (3rd–5th percentile) and Initiation/Perseveration (6th–10th percentile) scores were in the moderately and mildly impaired ranges, respectively. On the FOME Ms P retrieved 24 over five trials (out of 50) which was significantly impaired. In terms of language abilities, she demonstrated average performance on tests of verbal comprehension (71st percentile), category fluency (Animal Naming 25th percentile), and lexical fluency (40th–50th percentile). Her performance on the Trail Making Test was low average (14th percentile) on Part A and mildly impaired (8th percentile) on Part B. She did not endorse any of the items on the Geriatric Depression Scale.
Conclusions Ms P demonstrated significant cognitive strengths in several areas of functioning, but also demonstrated significant impairment in memory and executive functioning. Moreover her low average general cognitive functioning likely represents a slight decline from premorbid levels of functioning, which taken together with impairment in memory and executive functioning is consistent with a mild dementia syndrome.
CHALLENGES TO THE STANDARD APPROACH Intra-individual variability on cognitive measures An underlying assumption of cognitive screening and evaluation using brief batteries has been that the one-time test administration provides a reliable estimate of the person’s general level of cognitive functioning. It is not typically assumed that the person would perform better (or worse) on another occasion and the testing results are used as an estimate of functioning which we believe to be stable over the short term. Although this may be a reasonable assumption based upon classical test theory, particularly when the test has high levels of reliability, research from the cognitive aging literature challenges this assumption by demonstrating that both normally functioning older adults and those with cognitive impairment can demonstrate considerable variability over relatively brief periods of time (Allaire & Marsiske, 2005; Strauss, MacDonald, Hunter, Moll, & Hultsch, 2002). Moreover, intra-individual variability in performance on cognitive measures increases in the context of dementia and cognitive impairment (Hultsch, MacDonald, Hunter, Levy-Bencheton, & Strauss, 2000). Although this has not been studied specifically in relation to cognitive screening the implication is that
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intra-individual variability on cognitive measures such as that observed in the Hultsch and Allaire studies could impact the result of cognitive screening efforts, particularly when scores fall near established cutscores. The development of alternate forms on two of these batteries (DRS-2 and RBANS) allows for repeat administration without significant practice effects; however, the extent to which short-term variability might be present has not been studied. As we learn more about the shortterm stability of cognitive functioning among people with suspected dementia, the field may need to respond by specifically evaluating the extent to which screening measures and brief batteries are affected.
Technology and Screening Testing in the context of dementia can be accomplished through a number of means and in a number of different settings. Brief batteries and screens have traditionally been administered by paper and pencil in a community setting or clinic offices, but advances in technology and changes in our health care system have led to increasing use of automated testing systems in both telephone and computerized formats. Screening instruments designed to be administered by telephone or computer may serve an important role in the screening process and be a candidate for more widespread application in the future. Many elders living in a rural region often find it difficult to receive cognitive impairment screening due to transportation issues or lack of proximity to a specialist. People living in underserved regions have limited access to general practitioners, psychiatrists, and psychologists who could potentially administer a dementia screening instrument. For people with limited access to health care, an alternative to dementia screening measures that require in-person administration is therefore needed. Dementia screening measures administered by telephone or computer may fill a void left by a lack of available resources to a segment of the population. Two of the most widely used and researched telephone screening measures are the Memory Impairment Screen by Telephone (MIS-T; Lipton et al., 2003) and the Telephone Instrument for Cognitive Status (TICS; Brandt, Spencer, & Folstein, 1988). The TICS is a mental status screen that was developed using the MMSE as a model and takes approximately 10 minutes to administer. TICS total score has been highly correlated with the MMSE (Brandt et al., 1988). The TICS has been translated into and validated in several foreign languages, including Spanish (Desmond, Tatemichi, & Hanzawa, 1994; Gude Ruiz, Calvo Mauri & Carrasco Lopez, 1994), Italian (Ferruccil et al., 1998), Finnish (Jarvenpaa et al., 2002), and Japanese (Konagaya et al., 2007). A shorter version of the TICS (TICS-m) is also available, has been validated in Hebrew (Beeri, Werner, Davidson, Silverman, & Schmidler, 2003), and slightly outperforms the TICS in the detection of mild cognitive impairment (Welsh, Breitner & Magruder-Habib, 1993). For the telephone version of the MIS, the person being tested is presented with two words and asked to repeat them. The test administrator then presents a category cue that is associated with one of the two initially presented words and instructs the person to choose which word forms the proper association. Next, the administrator presents the category cue for the remaining word and repeats the process using different words and associated category cues. Following a 2e3 minute distracter task, the person is instructed to recall as many of the words as possible. If a word is not recalled, the examiner verbally presents the semantic category associated with the unretrieved word and gives a second opportunity to recall the word. Scoring is done in the same manner as for the in-person MIS. In the original validation study of the MIS-T (Lipton et al., 2003), the TICS and MIS-T were compared in a sample of 300 elders (9% had dementia) and demonstrated AUC estimates of 0.92 and 0.86, respectively. Using the best performing cutscores for the sample, the MIS-T had a sensitivity of 78%, specificity of 93%, and PPV of 52% compared to the TICS’s sensitivity of 74%, specificity of 86%, and PPVof 34% for the detection of all dementias. This pattern was also evident for the detection
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of AD with the MIS-T yielding a sensitivity of 89%, specificity of 93%, and PPV of 45% compared to the TICS’s sensitivity of 83%, specificity of 86%, and PPV of 27%. Sensitivity of the MIS-T for the detection of AD was improved when a category fluency task was administered during the distracter phase (89%) but still did not reach the sensitivity of the in-person MIS (93%). Dementia screening instruments administered by computer have not been as well validated as those administered by telephone. There are a number of challenges when validating or administering a computer screening measure that are not present when validating or administering a telephone screening measure. Familiarity with keyboards and computers in general may affect scores on computerized screening measures, and touch screens (a viable alternative that can help alleviate some of this effect) are expensive. Many computer screening instruments require reading and writing so they cannot be administered to those with poor reading skills, and computer screens that utilize reaction time in their scores may be affected by fatigue, frustration, or motor deficits not associated with dementia. There is, however, promise for the future application of computer screening measures. Several systems are under development (Headminder Cognitive Screening Test, Mindstreams) and await peer reviewed validation studies.
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APPENDIX
Appendix
Web site: http://www.gpcog.com.au
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References
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Cognitive Assessment in Late Stage Dementia
Cameron J. Camp1, Michael J. Skrajner2, Michelle M. Lee3, Katherine S. Judge4 1
Hearthstone Alzheimer Care, Woburn, MA, USA, Hearthstone Alzheimer Care, Wiboughby, OH, USA, 3 Department of Behavioral Medicine, Midwestern University, Downers Grove, IL, USA, 4 Department of Psychology, Cleveland State University, Cleveland, OH, USA 2
INTRODUCTION The purpose of this chapter is not to provide an extensive overview of all or most of the instruments used to assess cognitive function in late stage dementia. Such compilations already exist, and their authors have done an excellent job of summarizing assessment instruments currently in use (e.g., Auer, Sclan, Yaffee, & Reisberg, 1994; Bellelli, Frisoni, Bianchetti, & Trabucci, 1997; Boller, Verny, Hugonot-Diener, & Saxton, 2002; Morris, 1997; Perlick & Mattis, 1994; Reisberg, Sclan, Franssen, Kluger, & Ferris, 1994, 1996; Saxton & Boller, 2006; Weiner et al., 1996). While we will review some of the instruments used for assessing cognition in late stage dementia, this will be done within a different context. The focus of this chapter is to encourage the development of new assessment instruments designed to assist in the development of new interventions for this population. Such assessments and interventions must map onto elements in the infrastructure of care delivery systems for persons with dementia, which in turn will enable assessment and intervention to be sustainable. Therefore, we will discuss not only the information that current instruments provide, but also what they do not provide. We will attempt to elaborate a framework or set of boundary conditions for a new generation of cognitive assessment measures, and discuss the uses of such measures. It is our hope that readers of this chapter will be encouraged to view cognitive assessment in late stage dementia as an integral part of an overall program for designing interventions (cf., Weaverdyck, 1990, 1991a, 1991b). We will offer examples of some initial efforts in this area to illustrate these points, and how intrinsic motivators within care delivery systems for persons with dementia can be related to assessment and intervention. We will also address multicultural diversity issues as they relate to these issues.
PROBLEMS IN ASSESSING COGNITION IN LATE STAGE DEMENTIA If measures for assessing cognition in late stage dementia already exist, why should there be a call to develop new ones? A multitude of problems still challenge those who attempt to make such assessments. Most research on classification and test development in dementia has had two primary goals: (1) providing a diagnosis of dementia and (2) providing inclusion/exclusion criteria for clinical trials research. As a result, most research in test development has been conducted on persons with “pure” (or Handbook of Assessment in Clinical Gerontology. DOI: 10.1016/B978-0-12-374961-1.10020-X Copyright Ó 2010 Elsevier Inc. All rights reserved.
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CHAPTER 20 Cognitive Assessment in Late Stage Dementia
probable) Alzheimer’s disease (AD), with an emphasis on early to middle stages of AD. These individuals have been the primary targets for creating tests that can accurately diagnose AD at earlier and earlier points in its progression. More recently, this population has been targeted for testing the efficacy of pharmacological interventions. This has been driven, to some (perhaps a large) extent, by the demands of the U.S. Food and Drug Administration that any drug designed to alleviate cognitive symptoms of dementia demonstrate a statistically significant effect using the cognitive subtest of the Alzheimer Disease Assessment ScaleCognitive (ADAS-cog; Mohs & Cohen, 1988). The ADAS-cog has become, in essence, the gold standard by which any intervention for Alzheimer’s and related disorders is determined to be effective or not, and as such this assessment has been translated into a number of languages. Of course, sensitivity to this measure generally is greater in persons with earlier stages of dementia compared to later stages of dementia, where floor effects are more likely to be obtained for this measure. [It is of interest to note that NamendaÒ (memantine HCl), the first drug developed to treat symptoms of more advanced dementia, was developed in Europe under a different regulatory system for drug development for dementia.] This has led some researchers and clinicians to refer to late stage or severe dementia as the “neglected half of Alzheimer disease” (Auer et al., 1994). By contrast, in long-term care facilities, where most persons in late stage dementia reside, pure AD is rarely encountered. Comorbid conditions are the norm rather than the exception, and these may affect cognitive status, functional ability, and the expression of dementia’s progression in significant but unknown ways (Lichtenberg, 1994, 1998). For example, declines in sensory and motor functioning that are generally present in persons with late stage dementia make it difficult to maintain standardized assessment protocols, and challenge the validity of many test scores. Many assessment tools that have traditionally been used with less impaired persons with dementia are limited by floor effects when used with persons with severe dementia. In addition, brevity of assessment is especially important in late stage dementia to guard against fatigue and frustration. Finally, it is important for instruments designed specifically to test cognitive performance in persons with late stage or severe dementia to be validated cross-culturally. For example, the Severe Impairment Battery (SIB; Saxton, McGonigle-Gibson, & Boller (1990) has translated versions that have been validated with individuals in several countries (see Saxton & Boller, 2006). As Boller et al. (2002) indicate, there is a high proportion of severe dementia among inpatients across countries. Thus, the ongoing development of cross-culturally valid assessment tools for severe dementia is especially important. Problems in assessing cognitive status in late stage dementia extend beyond existing instruments themselves, for they involve more fundamental questions such as: How should late stage dementia be defined? Why should cognitive assessment be conducted for persons with late stage dementia? How should cognition in advanced dementia be assessed? Can cost-effective measures be developed that can be used on a large scale? Who should conduct these assessments? How should information obtained from these assessments be utilized? In this section we will discuss some of these problems, and review representative cognitive assessment measures within this general context.
Defining Late Stage Dementia First and foremost, the definition of late stage dementia or “severe impairment” in dementia lacks precision, and varies according to the setting, the comparison group, the purpose, and the professional making this judgment. One way in which late stage dementia or severe impairment may be characterized is via global rating scales. Saxton and Boller (2006) discuss several global rating scales that have been used to define severe dementia. Severe dementia has been delineated by a “score of 6 or 7 on the Global Deterioration Scale (GDS),” or “a score of 3 or higher on the Clinical Dementia Rating (CDR) scale,” or “categories 6a to 7f of the Functional Assessment Staging Test (FAST)” (Saxton &
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Boller, 2006, p. 43). Saxton and Boller (2006) also point out that scores of
